Biodiverse Resistance

Jessica Davanzo Must Stay In The UK!

2009-07-09T10:28:00.003+01:00

Jessica Davanzo, a survivor of domestic violence and a Personal Assistant essential to her disabled employer, has been unjustly threatened with deportation by the Home Office, in direct contradiction of its claim to be "building a safe, just and tolerant society".

Jessica Davanzo, originally from the US, moved to the UK on a 2 year visa in October 2006 after marrying her ex-husband, a UK citizen, and breaking all ties with her former life in the US. However, after she moved to the UK, but before her visa came up for renewal for indefinite leave to remain, her husband started abusing and threatening her, forcing her, after many attempts at relationship counselling failed to have any effect on his increasingly abusive behaviour, to leave him, move to another town (Northampton) and start a new job.

Soon after this, and possibly as a result of the stress and trauma she experienced, in June 2008 Jessica became ill with a neurological condition called Guillain Barre syndrome, which resulted in her spending 6 months in hospital and being temporarily paralysed, needing intensive rehabilitation to regain the ability to walk, as well as having longer-term effects of chronic fatigue and back pain, and being unable to work for 10 months. Due to her immigration status Jessica had no access to any form of UK state benefits, leaving her destitute and at risk of homelessness.

As a result of this experience of impairment and the awareness of disability it brought with it, after her recovery Jessica decided to work as a PA (Personal Assistant) for a disabled employer, Roxanne Homayoun. Roxanne, who has physical and visual impairments and requires 24-hour assistance, and is an activist for disability rights with an MA in 20th century history, said "Jessica is such a truly positive, honest, and principled person that she has helped me to see that many of my dreams are still achievable, they just need modifying. I would be absolutely devastated if Jessica is deported."

In the notice of decision dated 3rd June 2009 (which Jessica only received on the 10th June), she was informed that there was "no right of appeal against this decision" which she was later told by an immigration solicitor was not in fact true. Jessica and her solicitors are now seeking a judicial review of the decision. She was also told, despite several police reports and a supporting letter from Victim Support, that "you have not produced evidence to confirm that your marriage was caused to break down during the probationary period, as a result of domestic violence".

Jessica's case brings together issues of vital concern for feminists, disability rights activists and all those who support the free movement of people across borders. The UK Government's decision to demand that she leave the country shows a complete disregard for the circumstances of women fleeing abusive relationships (if she had stayed within the relationship and continued to submit to her ex-husband's violence, she would have been permitted to stay in the country - what message does that send to women trapped in such situations? This is victim-blaming at its worst - women being punished for getting out of a life-threatening situation or rewarded for staying within it) and for the incredibly important role of PAs in maintaining disabled people's independence.

The letter Jessica received from the Home Office claims that forcing her to leave the UK is not a breach of Jessica's human rights under Article 8 of the European Convention on Human Rights. However, they have totally failed to take into consideration the human rights of her employer, Roxanne, whose physical safety, freedom of private life and ability to participate in political society would all be put in serious jeopardy by the loss of her PA, given the extreme rarity of PAs with whom disabled employers are able to build up the sort of relationship (itself arguably "family life" under Article 8 of the ECHR) enjoyed by Roxanne and Jessica.

If the UK government cared either about women survivors of marital abuse or about disabled people who need assistance to live independently (for whom it can take an extremely long time to find a PA with the right attitude to genuinely support their human right to choice and control over their own lives, and for whom losing such a PA could easily result in risk of institutionalisation or life-threatening neglect), then it would not have threatened Jessica with deportation. Jessica Must Stay!

There is an online petition to let Jessica stay in the UK here and a Facebook group in support of her (with at the time of writing over 160 members) has been set up here.

Roxanne and Jessica are friends of mine, and came to the recent DAN actions in London and Birmingham that i blogged about. This is the press release that i sent last night to national newspapers, Northampton local news, Midlands/East regional TV and radio, the UK radical/"left-wing" press and UK disability organisations. Please forward to anyone else you think is relevant...

Recent Links of Awesome #5

2009-06-27T21:26:00.003+01:00

I don't really know why i haven't blogged in over 2 weeks; there have been lots of things i've wanted to blog about, i've just somehow not quite had the energy or motivation to do so. I've also been trying to organise quite a few things in the offline world which have been taking up a lot of my time and energy. Anyway, there are things i'm really going to try to write about in the next week or so, but in the meantime, i thought i'd do a link post, as i've read quite a few really good posts on other people's blogs recently...

Bev at Asperger Square 8 has a powerful and moving post called Flocks, which (even though i don't have/do the pet/caged animal thing) has a hell of a lot in it that strongly resonates with me. I need to post more about friendship/social group dynamic issues.

Urocyon is a blogger that, somehow, i've only just discovered (from her comments here) - a Native American autistic anarchist living in the UK (it always pleases me to find other anarchist/libertarian-socialist people on the spectrum "out there", and especially in the UK... tho there are actually quite a few i know of now, whereas even 5 years ago i couldn't imagine encountering more than the one i already knew...), and i've been really enjoying reading through her posts. This one particularly stands out to me as worth linking, as i think it really brings together disability-rights and post-colonial critiques of charity (and puts them in an anarchist context), and a proper libertarian-socialist critique of the concept of "charity" that incorporates all those perspectives is both something i'm incredibly excited about, and long overdue...

Lindsay at Autist's Corner has several posts about the revision of the DSM (which i really need to blog about), including this one on "autogynephilia" as a pathologising categorisation of trans women, which links to this (scary but essential reading) post at Feministing by Julia Serano about aspects of the DSM revision that "should be of great concern to feminists, as well as anyone else who is interested in gender and sexual equality". Lindsay also recently posted a link to this study linking autism and trans/genderqueer identity, which is (IMO) nothing new, but interesting as "official" confirmation of the intersection nonetheless.

cripchick has a great discussion about what constitutes accessibility, to which i have pretty much nothing to add, but which is probably actually the best resource for planning accessible events - in as broad a sense as possible, and going beyond just disability/impairment issues - that i have seen anywhere on the web.

AnneC at Existence is Wonderful has written a great 2-part post called "On The Feeding of Quirky Mammals" (part 1, part 2), on autistic issues to do with food, hunger and appetite (the only reason i haven't commented on it is because my response would probably be as long as the post itself - in fact, i may write my own post on the issue). Her experiences are in many ways similar to mine, but in other ways very different - but this is yet another area that massively needs an autistic-led "literary conversation".

Finally-for-now, for a bit of humour too good not to share, the latest xkcd comic is utterly awesome (and so often me... well, if you replace the maths with esoteric sociopolitical theory-stuff) - i've long suspected that Randall is on the spectrum, and there are hints in a couple of earlier comics (such as this one), but this one is, i think, as near to proof as could ever be needed.

More soon...

Reclaiming words: Who can reclaim what?

2009-06-10T23:36:00.002+01:00

I suppose i'd better start this post with a warning, however obvious it might be: this post will, by necessity, contain many words which many people will find hurtful and/or offensive. It's pretty much impossible to talk about the politics of reclaiming words used against minority groups without using those words, so if you are someone who is triggered or offended or similar just by seeing those words in print, then don't read this post, because it would be impossible for me to write it without using them. (Some may think that that means i shouldn't write this post at all; they should be right. Give me a convincing argument that i shouldn't have written it in the comments, and i might agree with it - but this post is, itself, an attempt to address that debate...)

I've been vaguely thinking about the politics of reclaiming offensive words for quite a while, but a few recent discussions in different places inspired this post. Firstly, there was a subscription request to an email list that i am a moderator of (which, incidentally, has nothing at all to do with disability, or any minority/identity politics - it's a local climate change activist list) from someone whose email address was "retardedgimp@_______.com". This pretty much stopped me in my tracks - my first thought was to delete it as the person must have been trolling and have registered that email address solely to be offensive. Then i thought of other possibilities - that it might actually be a disabled person reclaiming the terms "retarded" and "gimp" as positive self-description... or that it might be a non-disabled person who was, perhaps somewhat misguidedly, using the "non-PC" or "outsider" value of those words as some sort of intended-to-be-positive (although probably still offensive) jokey self-deprecating/self-aggrandising (depending on which way round you look at it).

I posted in my Facebook status that i wasn't sure how to respond to it, and got a few responses - the first (from someone who, i think, assumed the owner of the email address was a disabled person) saying:

Is it really any different to someone calling themselves a "cripple"?

For some reason most disabled people respect the reclamation of most old, offensive words, except retarded. Retarded is seen as evil at all costs and must never be used.

I'm in favour of reclamation equality. If I can call myself a cripple then a learning disabled person has every right to call themselves a retard.

However, another person responded: "i actually dont even like people whose impairments don't cause spasms using the term 'spaz'" - implying arguably that the term "retarded", by analogy, was reclaimable, but not by all disabled people, only by those with learning disabilities - despite the fact that, in my experience, "retard" gets used as an insult for anyone who appears to be disabled, whether the impairment is physical or mental, and so does "spastic"/"spaz" (although there may be UK/US differences there - i seem to recall reading about someone in the US who grew up thinking that "spastic" referred not to the muscle spasms typical of cerebral palsy, but to behaviour typical of people with ADHD - perhaps similar to casual usage of "manic" over here?)

I think the first commenter was right that, of the many common disability-related slurs and insults, "retard" is the one that never or almost never seems to be reclaimed. I've been struggling to articulate why i think that is, and why there seems, for me, to be an inherent negativity in "retard" that makes me feel like it, unlike "crip", "gimp" or even "spastic", is unreclaimable, that it's something people would never want to call themselves - is it the mind/body dualism (which i think is a false one) so prevalent in our culture that makes terms referring to the state of someone's mind somehow seem more "fundamental", more "intrinsic" to a person than terms describing the state of someone's body? (and, if so, why do i not mind the reclamation of terms like "nutter" and "mentalist"?) is it the meaning of "slowed" or "delayed" that just seems inherently negative, with nothing reclaimable for positive meaning within it? or is it something entirely different? could there even be internalised vestiges of patronising stereotypes in my perception of it as more unambiguously negative than physical-impairment-related words (learning-disabled people being seen as intrinsically unable to defend or define themselves)?

Looking around for discussions in the disability blogosphere about reclaiming words, i found this post by PhilosopherCrip (whose blog i have somehow been ignorant of, despite friends like cripchick being regular commenters there - and there's another thing - can i imagine a blogger calling hirself "PhilosopherRetard" or "retardchick"?), discussing different usages within the disability community of the word "crip" - as a term that can be used as a political identity for all disabled people, or only for those with physical impairments? Even within the radical part of the UK disability rights movement, i find people who use both senses of the word - some physically impaired activists explicitly including all disabled people, regardless of impairment, in it, while a visually impaired activist friend uses it in a sense that very clearly doesn't include himself, for example critiquing paradigms of personal assistance as "all defined by crips" (meaning physically impaired people to the exclusion of other categories of disabled people). I find my own use of the term to be ambiguous, not actually certain whether i am using it in the inclusive or exclusive sense, and never quite certain whether, as an "able-bodied disabled" person, i can use it to include myself - but i've never felt that i shouldn't use the term at all, as the friend who commented on my Facebook status clearly felt about "spaz" (and many trans people do about "tranny"; see further down this post).

In the comments to PhilosopherCrip's post, cripchick says "but to switch it up a bit, if ND really took power in ideology and the shaping of our movement, what would the disability community look like if everyone called themselves aspies?" It's interesting that my first reaction to that is "that's a completely different thing", seeing "A/aspie" (i'm never sure whether or not to capitalise, TBH) as far more specific, and feeling both that physically impaired people could and should object to "aspie" being used as a blanket term for all disabled people, and that i would be uncomfortable with the term being used to refer to a person who was physically (or otherwise) impaired but not on the autistic spectrum.

Then again, i have mixed feelings about the term "aspie" anyway; for one thing, i'm not sure that i want a term deriving from the name of a doctor who studied autistic children in the 1930s to be a part of my identity, for another i think it's a loaded term with regard to the so-called distinction between "Asperger's syndrome" and "(non-Asperger) autism", which i think is a totally untenable one (the ever-amazing Amanda Baggs has great posts about this here and here), and i don't want to support that division; but sometimes i do use it to refer to myself, as a convenient shorthand, or for example when saying that someone "has a few Aspie traits" (where those would usually be traits of the general type of autism which is highly verbal but impaired primarily in non-verbal communication). "Autie" could be an alternative, but then that tends to get used in phrases like "aspies and auties" to refer specifically to "non-Asperger autistics", so that's problematic too; in the end, for my own self-definition i think i prefer just using "autistic".

This isn't just a debate in the disability sphere: recently on Questioning Transphobia, there was a repost of a call for submissions for a book called "Gender Outlaws: The Next Generation" by Bear Bergman, and in both places heated discussion emerged of the reclaimed-or-otherwise status of the term "tranny", which seems to be somewhere between "crip" and "retard" in the reclamation stakes - in that, unlike "retard", there are significant numbers of people trying to reclaim it, but unlike "crip", there are significant numbers of people who don't think it should be reclaimed at all (or, at least, i don't think i've seen that attitude to "crip") - but, like "crip", there is also a debate about whether a wider group (in this case, all trans* people) can reclaim it, or only a narrower subset (in this case, trans women) within that group, with many trans women making a convincing case for the latter based on the fact that it is primarily, if not exclusively, trans women against whom "tranny" is used as an insult. I'm a bit agnostic on this one, as it's not a term that applies to me in either case (although i might fall within some definitions of the term "trans", i am cissexual and pass as cisgendered), but i am not certain whether, for instance, i should call out its usage when a male-assigned-at-birth genderqueer friend who falls somewhere between "transvestite" and "transsexual" on the transfeminine spectrum (he performs a female gender role without intending to pass, but uses male pronouns when not doing so) refers to his performing female gender as "going out trannying", or to "heterosexual trannies" (meaning heterosexual men who sometimes dress as women, rather than, as i would have assumed he meant, trans women who were exclusively sexually attracted to men).

I find myself agreeing with the commenter at Questioning Transphobia who says that "it has as much to do with misogyny and male dominance as transphobia"... but then i also find myself agreeing with another commenter who says "How the hell is it transmisogynistic for someone who was male assigned at birth, (I’m pretty sure still does, or at least has in the past) identifies as femme, usually uses female pronouns, and in general moves through the world as a woman, to use the word tranny?" - however, this one is clearly not my battle. With both "crip" and "retard", i'm not entirely sure whether it's my battle or not - "crip" is if it refers to all disabled people, but not if it only refers to physically impaired people, and "retard"... well, arguably includes me as a cognitively impaired person, but then, at school i was bullied and insulted for being "too clever", not the opposite, and as an adult have encountered terms like "nutter" and "psycho" used hurtfully far more often than "retard" (if i've ever been on the direct recieving end of the latter, which i'm actually not sure of).

I've seen this sort of thing happen with racial and ethnic insults too; apart from the reclamation of "nigger" in hip-hop culture (which has been discussed exhaustively all over the internet, although i'm too tired to find links now), the word "Paki" was used extensively by young people of Pakistani origin in the town i grew up in to refer to themselves and each other (the main ethnic group most of them actually were was Pashtuns, some of whom were from the Afghani rather than the Pakistani side of the border), but there was disagreement over whether non-Pakistani South Asians (such as Sri Lankans and Bangladeshis) were "allowed" to use the term, and its casual usage among Pakistani youth caused a lot of non-Pakistani young people to feel they could use it without that usage being racist... although in some cases it definitely was (for example, one white convert to Islam i knew who had no hesitations about using it disparagingly, saying for example things like "Pakis aren't proper Muslims").

(Actually, i will say one thing about "nigger": if i hadn't downloaded Saul Williams's most recent album "The Inevitable Rise and Liberation of Niggy Tardust" when he made it available free for a limited time from his website, i would definitely have felt uncomfortable asking for it in a shop. Its title track itself plays on the discomfort white hip-hop fans have with the word "nigger", with its chorus "When I say Niggy, you say nothing" - the name is also a pun on David Bowie's Ziggy Stardust.)

Of course, i can't have a post about reclaiming words without mentioning "queer", which i think in some ways is both the most and least problematic of all reclaimed words, precisely due to its being by far the widest in scope (unless anyone can think of another?) - as someone recently said to me with reference to the trans/transgender/genderqueer debate, the problem with "queer" is that it is so wide in scope that it can mean almost anything that people want it to mean - and yet, despite the massively wide reclamation of "queer", to such an extent that many people have stopped seeing it as an offensive or even formerly-offensive term (and thus, perhaps, it's even lost the subversiveness and radical edge that it once had in terms of being deliberately chosen as a self-identifying term because of its offensiveness), i know people from some parts of the UK who, despite only being in their late 20s, find it strange that "queer" can be used as a "positive" term because they grew up hearing it used only as an insult. Anyway, extremely long books could be (and probably have been) written about "queer", and i still have some more specific posts planned on that word and how it relates to me, so i won't go into it any further here...

Like with my previous post about disability terminology, i don't have any answers here; i'd just like to throw it out to debate, largely because, while i've seen plenty of discussions about the appropriateness or otherwise of reclaiming particular words with regard to disability, gender identity, race/ethnicity and sexuality, i'm not sure if i've ever seen any attempts to put together a coherent analysis of reclaimed words across all dimensions of oppression (and i'm very aware that there are many i haven't even touched on here - words for sex workers, for example, or words for female genitalia used as insults, to pick two obvious categories... and i'm sure there are more).

A pattern i find particularly interesting that crops up repeatedly is the ambiguity of how widely words can be reclaimed - just where are the boundaries of the group allowed to do the reclaiming? - which seems to me to feed into much bigger questions about identity politics and whether it's unitive or divisive, the fluidity of identities and just how "self-defined" identities relate to those defined from outside or "above", etc - which is of particular interest to me with regard to my strong feeling that all people who are oppressed or discriminated against because of biological or cultural difference have common interests and parallel experiences, and have much to gain from allying with one another - yet at the same time, the identities of individual minority groups can be fiercely and jealously guarded, and there is a fuzzy and incredibly difficult (for me, anyway) to locate line between alliance, analogy and appropriation (I tend to have a vague and general discomfort with the idea of words that some people are "allowed to use", but others are not, which i think also needs to be somehow factored in here)... what do people think of this? Any and all responses welcome...

Terminology request: trans and genderqueer

2009-06-06T19:26:00.003+01:00

I want to post in more detail about this sort of thing, but haven't time/spoons right now - however, i've had a couple of conversations (one here, the others have been with an offline friend and on Facebook) where the same thing has been mentioned, so i'd like to ask others what their opinion/usage is...

It seems like the ways that i use the terms "trans" and "genderqueer" is the opposite way round from how many (most?) other people use them:

I tend to use "trans" to describe people who either transition from one sex to another (transsexual) or who deliberately present themselves as the (broadly) binary gender opposite to that traditionally associated with their physical sex (transvestites/crossdressers*, drag performers, etc), and "genderqueer" to mean a much broader group of people, including the genderless/agendered (like myself), those who feel they are a mixture or composite of both "binary" genders, those who feel they have a strong gender identity but that it's not one of the binary genders, etc - basically, anyone who isn't cisgendered (and possibly some people who are cisgendered, but still oppose the gender binary). Thus, for me, most (if not necessarily all) trans people are genderqueer, but not all genderqueer people are trans (I tend to say that i am genderqueer but not trans).

*I'm also not sure what the difference between those 2 groups is, although i've been told that there is a difference (which confuses me a bit as the terms are respectively Latinate and Anglo-Saxon synonyms for each other). I tend to get hung up on the idea of clothes having gender, as to me, as clothes are inanimate, the only gender an item of clothing has is that of the person wearing it (shades of Eddie Izzard's "It's not women's clothing, it's mine") - but that's a side issue...

However, it seems like a lot of people - possibly the majority of trans/genderqueer activists - see the terms the other way round, regarding "genderqueer" as a subset of "trans" - thus "trans" being the more inclusive term, including anyone not cisgendered, and "genderqueer" being the non-binary or non-transitioning subset within that...

So, what is the generally-agreed-on usage (if there is one)? Would the majority of people in the trans/genderqueer/etc community consider a cissexual, non-transitioning genderqueer person to fall within the definition of "trans"? Is "genderqueer" best understood as a subset of "trans", or vice versa? Or is neither strictly speaking a subset of the other, but more like an overlapping Venn diagram - where some/many/most trans people are also genderqueer and vice versa, but there are both trans people who are not genderqueer and genderqueer people who are not trans?

For me, i think it would feel somehow unfair and/or appropriative to call myself "trans" - like i was claiming the identity and/or experiences of other people for myself, when i really don't have those experiences at all - i have never experienced body dysphoria, for example (or indeed identification with my body either positively or negatively), nor have i or likely ever will i experience being read as the opposite of what i identify as (more as something that has no relevance to my identity either way, which is, i think, far less traumatic and more just vaguely silly - being described as "male" or "a man" does make me feel dissonance, but only in a slightly bemused way, not the profoundly upsetting way that it affected many of the trans women i know) - but then, i don't feel like i'm being appropriative when i call myself "disabled", despite the fact that i don't have the experiences of a physically impaired person and that, for many people in the cultural mainstream, "disabled" means "physically impaired" - but is me-as-a-non-transitioning-genderqueer calling myself "trans" more like me-as-a-mentally-but-not-physically-impaired person calling myself "disabled", or more like, say, someone with a physical (but no other) impairment calling hirself "neurodiverse" (which i would consider appropriative)?

So, um, yeah. I can't seem to find any "official" definitions of "trans" or "genderqueer" stating which of the two is the more inclusive term, and i'm not 100% sure where my own (possibly wrong) understanding of the definitions came from - most likely from conversations with the trans woman friend who first opened my eyes to the existence of gender identity (prior to knowing her, i had lived under the impression that gender identity isn't innate for anyone, but comes entirely from socialisation processes that i had missed - a position that i think some cissexual socialist and radical feminists still seem to take), and others i got to know through her, who were all fairly "feminine", binary-identified fully-transitioning trans women (it wasn't until much, much later that i even knowingly met any trans men or FAAB genderqueers, which makes me still find the common assertion that trans men and FAAB genderqueers dominate trans community and discourse very strange and not-my-experience), to whom i would be a "trans ally", but pretty definitely not "trans" myself...

So if anyone can shed any light, i'd be grateful, as i don't want to be using terms at cross-purposes to others using the same terms, especially with the levels of emotional investment that many people seem to have to them. I, personally, am not so strongly attached to my usage as to want to cling on to it in the face of opposition, as i basically feel that i know what i am, even if i don't know the "correct" word for it - but i don't want to use terms to describe myself that inadvertently either appropriate others' experiences, could be construed as denial or distancing from other people on the gender-variant continuum, or would seem to most people to be inherently nonsensical or self-contradictory...

Oh, the irony: part 3

2009-06-03T22:40:00.003+01:00

Previous posts in this picture series: Part 1, Part 2...

This is a photo of the doorway of an estate agent's on Kings Heath High Street, Birmingham. It shows the lower half of an old-fashined shop doorway, with part of a window visible on the left (in the window is one of those office-type blinds, and you can see some adverts for houses). The door and window frame are painted dark blue. On the door, above 2 letter boxes, is a sign which says "Inclusive Access for Disabled Customers", in white on a blue background. Below the text on the sign are symbols of a wheelchair user, a person walking with a cane, an ear with a bar through it (symbolising hearing impairment) and an eye with a bar through it (symbolising visual impairment). Next to it are 2 smaller signs, one advertising a hearing aid loop and one saying "No Smoking".

In front of the door is... A STEP. A big, stone step - i would guess the height is about 8"/20cm from the pavement to the level of the door. There is no ramp, there is no alternative entrance, not even a bell or buzzer saying "please ring if you need assistance". Yes, that's right, the shop is completely inaccessible to wheelchair users. Presumably, the business owner must have thought that just putting a sign on the front door saying "Inclusive Access for Disabled Customers" would somehow magically make that inclusive access a fact, and/or was an acceptable substitute for actually making hir premises accessible.

WTF???

Disability, Gender and Horror in "Planet Terror" and "The Orphanage"

2009-05-25T14:11:00.006+01:00

Note: this post contains spoilers for both films mentioned in the title. If you haven't seen either of them, and would like to see them without knowing what happens in them beforehand, then don't read this before watching them!

The Orphanage (original Spanish title El Orfanato), directed by Juan Antonio Bayona, and Planet Terror, directed by Robert Rodriguez, are two recent-ish horror films which, like many in the genre (but possibly more explicitly than most) contain strong disability themes. Both films, according to Wikipedia, originally came out in 2007, although i'm not sure if the UK cinema release of either was in 2007 or 2008; I have owned DVDs of both for several months, but only got round to watching them in the last couple of weeks, hence my reviewing them now. Apologies to Lisy and Tera for stealing their blogging turf ;)

The films are from opposite ends of the horror spectrum (Planet Terror is a homage to 1970s "exploitation" films, with an emphasis on gore, action, special effects and "rule of cool" characterisation, while The Orphanage is more of a supernatural/psychological "chiller", with quite an "arthouse" vibe (although it has to be noted that anything filmed in a language other than English and/or subtitled tends to get put into that category in the mainstream press, even if it's wildly inappropriate)), and they have extremely different visual styles. Nonetheless, there are several parallels between them; both were produced by a more famous director than those who directed them, and used that director's name heavily in marketing (Quentin Tarantino in the case of Planet Terror, and Guillermo del Toro in the case of The Orphanage). As well as the disability themes, both play to an extent on gender roles using female protagonists (conventionally or otherwise), and both can be seen (albeit through readings that may not necessarily correspond with authorial intention) as critiques of paternalistic medical and social "care" systems.

In Planet Terror, the main protagonist (played by Rose McGowan) is a sex worker who becomes disabled early on in the film, losing a leg as a result of a zombie* attack, and first gets a broken-off table leg as a makeshift prosthetic, then later (actually surprisingly late in the film for me, given it being the iconic image that was plastered everywhere of the film) gets her leg replaced with a machine gun, which she uses (rather implausibly, seemingly able to fire it by moving the leg stump alone - tho that fits in with the general over-the-top, stylised tone of the film, a Tarantino hallmark shared with the somewhat thematically similar Kill Bill) to massacre zombies and save the day, thus gaining power and purpose as a disabled person with assistive technology - in fact, becoming an effective saviour of humanity as implied by the ending - that she never had in her pre-impairment life, which, IMO, even if Rodriguez didn't realise it, is an audacious subversion of the usual disability tropes found in horror and action films (where disabled characters are nearly always either pathetic victims, mentor/mastermind types detached from the action, or monstrous villains/antagonists).

*Some purists may argue about whether the "zombies" in Planet Terror are actually zombies, as they are mutated by a virus rather than reanimated from the dead by supernatural means. However, they act like zombies, and even on the DVD cover Planet Terror gets described as "a kick-ass zombie movie"... so i'll call them zombies for convenience.

A secondary protagonist, a female doctor (played by Marley Shelton) at the hospital where the zombie plague is first discovered, is also rendered (temporarily) physically impaired by her abusive husband (who is also a higher-ranking doctor, played by Josh Brolin) when he finds out she is attempting to leave him, by injecting her hands with anaesthetic and paralysing them. Despite this, however, she still manages to escape from the cupboard he locks her in, get into her car, rescue her son and drive to her father's house, while fighting off several other antagonists along the way. Brolin's character is also portrayed as enjoying the power he has over his patients in a particularly arrogant and sinister way, and can be seen as representing the authoritarian nastiness of patriarchal medicine (one could even see Shelton's character as representing a more positive vision of medical professionals allied to their patients or the community rather than to "the system", or as a medical professional whose "switching sides" by becoming disabled herself parallels her decision to liberate herself and her son from the abusive family relationship). Brolin's character also ends up becoming one of the "infected" himself, linking his patriarchal and medical authority with the military-industrial conspiracy origin of the plague.

Thus, Planet Terror is, for me, that unusual thing, a relatively-mainstream horror movie that seems to be thoroughly and unambiguously on the side of the oppressed - unlike the many other horror films in which disabled or otherwise marginalised people, when they gain power, use it for evil and have to be destroyed, in Planet Terror they are the protagonists and use their power to save the world (and even survive at the end, where the male, non-disabled, martial arts expert protagonist dies!), while the establishment-upholding institutions (medical, police and military/government) are portrayed as corrupt, evil and monstrous. (thanks to Tera for that insight :) )

The Orphanage is rather more ambiguous. The plot centres around a couple with an adopted son who buy the former orphanage that the mother (played by Belen Rueda) grew up in, with the intent of re-opening it as a "home" for disabled children. Their son is himself disabled, albeit without knowing it at the start of the film, as an HIV-positive adopted child (it's implied by his appearance and some incidental dialogue, but not explicitly stated, that he was presumably adopted from an institution in a developing country, probably (given the Spanish-language setting) somewhere in Latin America - although this isn't really touched on in the plot), but his parents are keeping this from him "for his own protection". The boy's finding out about his impairment and his origin, however, lead into the supernatural events of the plot, involving the ghosts of children who lived in the orphanage in the adoptive mother's childhood, who eventually lead both son and mother to their deaths.

The villain of the film is a former care worker at the orphanage (with the highly ironic name "Benigna"), who turns out to have killed the other children whose ghosts haunt the orphanage, after they caused the death of her own facially disfigured son, Tomas. However, Tomas and the other children all seem to be working together as ghosts, with no sign of enmity or tension, which strikes me as something of a plot hole; I was expecting Tomas' ghost to be an antagonist because of a grudge against the other children. Of the other ghost children, one is stated to be blind, while another wears a leg brace, but their impairments are incidental to the plot. The disabled children for whom Rueda's character had intended to reopen the orphanage are only shown briefly (although it looks like actually disabled child actors were used for the parts, albeit probably more accurately described as "extras" than "actors"), and again not much is made of disability as a plot element here.

Overall, The Orphanage felt to me like a film which could have made much more of the themes of disability and institutional "care" which formed the backdrop to its plot than it did; I was expecting it to have a much stronger theme of the true horror inherent in a segregated and institutional setting itself (as well as more of a presence of the disabled children the protagonists were reopening it for). It's also a much less radical film in its treatment of gender roles than Planet Terror - it follows typical horror film conventions of "emotional" female characters being much more receptive to the supernatural than skeptical, "rational" male characters, of women's primary identity being as mothers protecting their children, and of the "caretaker" role (whether seen positively as nurturing or negatively as authoritarian oppression) as a primarily female one. (In this it can be contrasted with del Toro's earlier The Devil's Backbone, also set in an orphanage and featuring ghost children, in which it is an abusive male authority figure who is led to his death by the ghosts, who can be seen as (anti)heroic rather than antagonistic.)

Laura, the main protagonist of The Orphanage, in some ways parallels Dakota, the secondary protagonist of Planet Terror: both are mothers of sons of a similar age whose sons die in ironically tragic circumstances, both are temporarily physically impaired by the actions of an antagonist, and both have husbands or male partners who are oppressively scornful and dismissive towards them (albeit one portrayed as actually abusive, while the other is merely the standard supernatural film "disbeliever" or "skeptic" character). Both also have antagonistic counterparts (Benigna and Dr Block respectively) who personify the authoritarian paternalism of medical and social care that disabled people are subjected to. However, Laura herself, as a (presumably) fairly rich and privileged international adopter of a disabled child, who plans to open what is still essentially an institution for other disabled children, is open to criticism as the same sort of "do-gooding" paternalist. (It's a subtle but pleasing parallel that both Laura and Benigna separated their own disabled sons from the other children in the institution - also, Laura's own rise from orphaned/institutionalised origins to proprietor of the same institution could be seen as showing an assimilation process of oppressed people being socialised to imitate, and ultimately become, oppressors.)

Both Planet Terror and The Orphanage are visually stunning films, although they use extremely different visual styles. Both also have flawed plots, in which some events seem implausible even given the supernatural settings and certain elements do not (IMO) entirely satisfactorily hold together. Both, however, are recommended for critical viewing, although of the 2 Planet Terror is the one that i think is the most radical and positive in the way it presents disabled and otherwise oppressed characters.

I find it interesting that this is somewhat the opposite of how the subgenres of horror film that The Orphanage and Planet Terror are representative of generally tend to get percieved - the subtler, more psychological "arthouse horror" of The Orphanage being generally praised by more intellectual critics and seen as more "alternative" and for the more "aware" or "discerning" viewer, whereas the gory, effects-heavy "action horror" of Planet Terror (and the older "schlock" or "exploitation" films that it draws on for inspiration) tends to be seen as the sexist, anti-intellectual domain of macho adolescent boys, and as using minority stereotypes in crudely exploitative ways. However, here it's Rodriguez's "exploitation" horror (with its roots in pulp sci-fi magazines, circus freakshows and the like) which is ultimately more subversive and minority-positive than Bayona's "intellectual" work. (It's worth noticing that the disability arts movement has a long tradition of reclaiming and subverting exploitative "freakshow" imagery, with Tod Browning's classic film Freaks as an arguable antecedent).

What i would really love to see is a horror film with disabled protagonists played by disabled actors, with the themes of institutions and their lingering, haunting legacy as used (if not explored as deeply as they could have been) in The Orphanage, but with the style and attitude of Planet Terror. (I'm sure the likes of Mat Fraser and Nabil Shaban would be interested in such a project, if there was a director and finance to get it off the ground. While doing dream casting, i'd love to have Sarah Gordy playing a protagonist and Liz Crow playing some role in either producing or directing...) Now that would be a true successor to Freaks. However, in the absence of such an imaginary film (and the extreme unlikeliness of anything like it ever happening), Planet Terror and (to a slightly lesser extent) The Orphanage are both above average for "mainstream" cinema, and worth watching for anyone with an interest in either "genre" films or in disability and its intersections with other oppressive systems...

What would/could personal assistance look like in a mutual aid society?

2009-05-20T22:10:00.001+01:00

I've been meaning to blog about this for a long time, but have been prompted into finally posting by the discussion involving Anarchafemme, Foibey and myself in the comment thread on this post at Anarchafemme's blog, which was getting quite a considerable distance from the original post topic, so to avoid derailing it any further, i thought i'd better at least make a start on the topic here. There's no way that this post is ever going to cover all of my thoughts here, but it's a start...

Background first: for almost a year now, i have been working as a PA (Personal Assistant) for a fellow disability rights activist with a physical impairment. There have been, and still are, various ongoing tensions within that working relationship, but those aren't (directly) the subject of this post, and it's still, by a long, long way, the best job (in terms of waged work) that i've ever had. In many ways, it's arguably the best possible job for an anti-capitalist - it doesn't benefit any oppressive corporation or state agency, it's effectively using money from the welfare state to sustain activism, and it (genuinely and directly, unlike so many other jobs in government departments or charities/NGOs that claim to do so) empowers and liberates oppressed people. It's also a job which does not require any particular educational or professional qualifications, and in which having experienced barriers to more "mainstream" employment is arguably actually an advantage (because members of oppressed/discriminated-against groups who tend to have such barriers are more likely to get the point that this job is about enabling and liberating, not controlling, patronising or "care-taking").

The paradigm of disabled people directly employing PAs, however, while being a major part of the Independent Living movement (a movement that i would argue is possibly the only minority liberation movement that is inherently both libertarian and socialist - but that's something i'll have to save for a future post) is one that is rooted in hierarchical and capitalist social structures of wage-work and the employer/employee relationship. Is there a contradiction here?

The employer/employee model of personal assistance comes from the concept developed by the disabled people's movement of "independent living" as not meaning "doing everything for oneself", but "having choice and control over one's own life" - a concept which, IMO, is the only concept of "independent living" which makes any sense in any modern context, as no human being in any present-day society (and possibly at any time in human history) is entirely self-reliant, but we are all interdependent on one another. This means, then, that being physically (or otherwise) impaired does not in itself prevent a person from being "independent", but it is social structures and policies that prevent people with personal assistance needs from having control over when and how they recieve that assistance that do prevent them from having "independence" in the choice-and-control sense (for one of many excellent articles on that topic, see "What's So Great About Independence?" by Sally French here).

This is libertarian in that it puts the freedom of choice of the disabled person over what happens to their own body and in their own life as the highest priority, and socialist in that paying for it is seen as the whole of society's, not just the individual's, responsibility - but where does it fit in with the anarchist/anti-capitalist/libertarian-socialist critique of the whole concept of wage work and employer/employee relationships?

Generally speaking, the anarchist vision of a world based on equality and mutual aid is one without any hierarchical relationships between (adult, at least) human beings - but the relationship between a disabled employer and hir PA is inherently hierarchical, and it's hard to see how it could not be without compromising the disabled person's autonomy. For anarcho-communists (which i would loosely speaking consider myself... although some anarcho-communists might disagree, and i generally prefer "anarchist without adjectives") at least, Utopia also doesn't have such a thing as money (as all production of goods is for need rather than for profit or exchange-value, and everything is shared freely) - but this also raises issues in relation to PA work, because of the issue of motivation...

In a "free" or "autonomous" society, in most anarchist visions, the motivation for any kind of work is either that the person doing the work enjoys doing it, or that the work needs to be done - in contrast to the "heteronomous" work that dominates existing capitalist society - work that is done not out of either need or desire to do the work itself, but because of a secondary motivation, namely the payment for doing that work - thus, people work in factories producing goods that they neither consume nor want to consume, or in administrative jobs that would have no purpose at all in a free society, because they need the money, leading to alienation (which is not seen exactly the same way in an anarchist as in a Marxist critique of capitalism... but, for now, close enough).

In PA work, however, the heteronomous nature of the work is arguably a good thing, because the fact that PAs' motivation for working is financial need creates a relationship that is co-dependent rather than one-way dependent - the PA needs hir job for the income as much as the disabled person needs the PA to get hir embodied needs met. This, however, only works in a capitalist wage-work system - in a moneyless anarcho-communist society (such as Anarres in Ursula le Guin's The Disposessed), where the motive for work is its necessity of the work itself rather than financial gain, I think there would be a significant risk of the PA/employer dynamic that currently liberates disabled people by giving them choice and control would be lost - it would be easy to fall back into a patronising "do-gooder" dynamic, where only the disabled person needs the personal assistance, meaning that the PA would be acting purely altruistically or as a "favour" to the disabled person. For many disabled people, that would be unacceptably like the paternalistic charity model, with disabled people expected to be the passive and grateful recipients of altruistically given "care", rather than in charge of their own assistance, which, in the currently existing model of PA work, their position of authority and financial power as employers allows them to be.

It could be hoped that in an anarchist society, with an explicit ideological commitment to opposing all forms of "power-over", the power of providers of assistance over dependent disabled people would be recognised as such and a paradigm based on rights and solidarity could be created to try to overcome that - but it still makes me feel slightly uneasy, because i strongly suspect it's inherent in human nature for those providing necessary assistance to others to feel that they should get some sort of "reward" in return, whether money or the praiseworthy status of "do-gooder" and the gratitude and subservience on the part of the recipient that comes with it... and also, even in anarchist circles, i have known too many people who have accepted paternalistic attitudes to disabled people all too easily (including several "anarchists" who have worked as "carers" in institutions, apparently without having the slightest idea of their jobs as being those of oppressors).

(This is, to an extent, also about intersectionality, and the fact that the disability rights movement has, at least in the UK, existed fairly separately from other new social movements and wider critiques of the statist/capitalist system, while the wider anarchist/anti-* activist movements have almost entirely failed to address disability issues...)

This post is not so much laying out any answers as asking questions and inviting debate - so i'd be particularly interested in replies from anyone who has any ideas about this (especially, in fact, from PA users). Does a model of personal assistance that is liberatory for disabled people only work within a capitalist wage-work system (where work is defined as "heteronomous production of exchange-values", as Andre Gorz says in Farewell to the Working Class), or can it transcend that system? Can disabled people with personal assistance needs be assisted effectively without depriving someone (either the disabled person or the PA) of autonomy? (Or should the employer/employee relationship between disabled person and PA be seen as "depriving" the PA of autonomy? Perhaps it could instead be seen as a form of consensual power exchange, similar to that found in some BDSM sexual relationships?) Is there a "3rd way" possible here, that is neither paternalist nor capitalist?

If we are to have a fully "joined-up" anti-oppression politics, these questions need to be addressed, regardless of whether they can be decisively answered. Anyone up for tackling them?

Biodiversity in the City #2: Dove

2009-05-14T02:45:00.006+01:00

I had intended to do a "proper" post today, but ended up expending most of my writing spoons for the day on other things (emails to a few friends, partly inspired by cripchick's Habit Forming Love posts) - but wanted to post something, so thought "hey, another animal picture post will do"...

As with the last one, this is an unusually-coloured bird; this time, a Collared Dove.

I took these photos some time last summer, with my old camera, so they're not particularly great quality, but not absolutely terrible either. Collared Doves are pretty common around Birmingham, but when i saw this pair, i instantly thought "that one looks an odd colour"...

The dove on the right is the "normal" colour for a Collared Dove; the one on the left, however, is considerably lighter, almost white. It isn't an albino, as can be seen in the next photo, in which it clearly has the dark collar which gives the species its name (an albino would be uniformly white all over), so i guess it must be some sort of leucistic. (Random thought: would the paleness of European humans, particularly blonde and blue-eyed ones, be considered to be leucism relative to the "average" pigmentation of the human species worldwide?)

I also considered the possibility of it being a hybrid between a Collared Dove and a feral pigeon, but a bit of searching found a photo of a hybrid between a domestic pigeon and a Ring-necked Dove (which is almost identical to the Collared Dove) here (about 3/4 of the way down), which doesn't look anything like it, so i think this bird is a "pure" Collared Dove, just a mutant one with an odd colour.

The Collared Dove has an interesting history, in that it's one of the very few birds to have naturally expanded its range (rather than being introduced by humans) across a continent. It was unknown in Britain before 1953, being regarded as native to Asia and just reaching into the easternmost parts of Europe, but for reasons unknown started spreading westwards, and is now a common and familiar British bird. A white dove traditionally symbolises peace; i think this bird is a fitting symbol of a multicultural city with a long history of immigration and people living in it from all over the world, including particularly large communities from several of the countries where this species of bird also originated from... Biodiversity in the city is both human and nonhuman, and they (sometimes metaphorically, sometimes literally) feed one another.

Can You Tell This Child Is Autistic?

2009-05-08T12:50:00.007+01:00

(Yes, i know i said in my last post that i was aiming to write something every day in May, and it's now the 8th and i haven't. My internet went down on Sunday night, and i didn't get it back until yesterday. I've also written a couple of things that weren't public blog posts. Anyway, this is the post that i had *intended* to do on Sunday night, before my mysterious (but luckily easily fixable) cable fault...)

My parents recently gave me a memory card for my digital camera (among other things) for my birthday. On the card were various sets of old photos that my dad had either taken with his camera, or scanned in from old pre-digital photos, one of which was a set of photos of me and my brother as children. I'm absolutely terrible at guessing children's ages, but i would guess that in these photos i look about 10 and my brother about 3, which dates them at round about 1992...

The thing that most strikes me about these photos is that, even if it wasn't me (and i'm not sure if i look at all recognisable as the same person as me now at a long-haired and bearded 27), i would be instantly sure from looking at them that the older boy was autistic. I'm not sure exactly what would bring me to this conclusion, but i think it's some combination of posture, facial expressions, and just possibly an actually physical "look" that i've noticed many (although by no means all) autistic people i've met have (something i'll probably get round to writing about in more detail reasonably soon).

(Yes, this is the sort of sitting position that i felt comfortable in as a kid. I also liked, up until i was at least 13 or so, to sit with my legs crossed in a very stereotypically "feminine" way, right thigh over left thigh or vice versa. I only stopped when i was taught in no uncertain terms at secondary school - when i was just starting to try to have friends and be accepted by other children - that it was unacceptable for a boy to do. It utterly puzzled me though, and still does really, what was/is gendered about that (well, i know physical anatomy, but still, sex != gender)...)

I also think this is a very "autistic" hand position... though i'm not quite sure why...

This was another typical pose for me. Although it was before i started having weird things going on with my joints, i wonder if the positioning of my right foot there does have something to do with my right ankle being one of the joints i get the most weird flexion and "clicking" with now.

(If anyone's wondering where the photos were taken... i think it was most likely Sherwood Forest, hence the Robin Hood caps. However, it also could have been the New Forest in Hampshire, as we stayed at my aunt's house there for a couple of weeks every summer for most of my childhood.)

Here's one of me sitting in a tree:

While i'm not sure there's anything particularly "autistic-looking" about me in that photo, it does show something of the expression i very, very often had (and occasionally still have) in photos, which got/gets misinterpreted as "fear"; in a couple of my school class photographs, i have been told that i stand out immediately from the (identically dressed) group of children because, to NT eyes, i look utterly terrified. For a long time i really hated photos of myself because they seemed to show, blatantly and undeniably, the "wrongness" of my facial expressions, which i was constantly trying to convince myself i was going to "overcome", while of course not really knowing what it consisted of either - it's only in the last few years that i've really got over this and started to find photos of me tolerable to look at.

This one was taken in my back garden at my parents' house, and i think makes me look particularly autistic:

The facial expression, the pose and the very stereotypical "acting out" of an "appropriate" emotion towards a fictional enemy (as i recall, the figure on the chalkboard was a henchman of the Sheriff of Nottingham who we had been practising firing our bows and arrows at - probably a few days after going to Sherwood Forest) - and indeed the fantasy play based on a recently visited location - all strike me as *very* typical of the autistic spectrum.

Also note what i was wearing - as a child, i had major sensory issues with clothing, and only found a very small range of clothes comfortable enough to be tolerable wearing. I don't think i ever stripped myself naked in public (i was too sensitive to cold for that), but i remember ripping my school uniform off as soon as i got through the door, finding it *very* difficult to cope with wearing a tie (something i still think is one of the most utterly pointless things ever invented, and its mandatory presence as "professional wear" in the majority of corporate offices is one of those things that just makes me go "WTF is this world?"). Outside school, the only trousers i would wear were these "tracksuit bottoms" - which were made of a very soft material and had elastic or a drawstring instead of a zip fly, meaning they had to be pulled all the way down to use the toilet (another thing that, therefore, had gendered stigma as well as disability stigma in schoolboy culture). Again, once in secondary school, i tried to wear jeans after finding out that wearing tracksuit trousers was "not normal", but found them horribly uncomfortable (although some of my sensory issues lessened a bit around that age).

(I finally threw away my last pair of jeans a couple of years ago, after realising that i had owned them for about 8 years and hadn't worn them in about 5, after discovering a perfect solution in the form of the "combat" style trousers i now wear pretty much exclusively, which are comfortable, practical (i now couldn't live without the side pockets, giving me 4 pockets per pair of trousers, as opposed to the 2 of most jeans and "formal" trousers) and, as far as i can tell, lacking in particular stigma.)

The stigma attached to those trousers is something i should perhaps explain, as it might be a strictly UK thing, i'm not sure. (It also might have been stronger in the 90s than now, again i'm not sure.) If a child over about 8 was seen wearing those sort of trousers, then they either had "something wrong with them", ie they were "retarded" or "mental" or "not all there", or indeed just "weird", which was a bit of a cover-all, or else their parents were too poor to afford to buy them "proper" trousers, which in the intensely disablist and classist (although not at all aware of either of those terms) world of suburban children in the 80s and 90s (and probably now, although i don't have direct observations) amounted to much the same thing - an acceptable target of taunting and bullying. An adult wearing that sort of thing would definitely be seen as having "something wrong with them", to the extent that they were seen almost as a symbolic uniform of learning disability (with attendant stereotypes about institutional living, incapability of achieving "independence", etc) - someone who wore them either did not choose their own clothes, or was so oblivious to norms of clothing choice that they had to be "not all there".

(There is a whole load of other stuff i could spin off that, about clothing, disability, stigma and more, but i don't have time right now and it probably deserves a post of its own...)

Anyway, i've strayed from my main point. As a child, as far as i know, I did not have any diagnosis of an autism spectrum disorder (and i was sent to several different child psychologists, and the subject of a huge amount of (mostly negative) "concern" about me, despite my very high academic achievements, for my complete lack of social integration with other children throughout my primary school years) - yet, looking back, it seems almost impossible that anyone, with even the level of familiarity with autism that most people in the general population now have simply through the mainstream media, could have observed me for more than a couple of minutes without identifying me as autistic. I had practically every stereotypical characteristic of autistic children, including many that tend to be regarded as unfair and erroneous stereotypes (which always makes me feel a bit awkward when they are discussed as such, because i want to say "er, as a child i actually was that") - a total lack of interest in or emotion about other "real" human beings (while having incredibly intense attachments to fictional characters), dozens of sensory intolerances, including refusal to eat the vast majority of foods and finiding nearly all human touch intolerable, meltdowns involving uncontrollable crying and attacking other children, selective mutism, obsessive memorising of facts and figures about narrow topics of interest, hand-flapping (i recall my mother telling me at about 8 "don't do that with your hands, it makes you look like a spastic"), pronoun confusion - you name it, i had it, basically... yet, AFAIK, autism was not even mentioned in reference to me throughout my childhood.

Why this was, i have utterly no idea. I have often wondered how much different my life would be if i had been diagnosed as autistic in childhood - on the one hand, i wouldn't have spent so long living in denial, confusion, self-hatred and paranoia, thinking "what the fuck is wrong with me, and why won't anyone explain to me all these things that everyone else seems to understand perfectly naturally, and yet somehow i don't?", i possibly wouldn't have alienated so many people who i tried and failed to be friends with and ended up offending or turning against me for reasons i couldn't comprehend at all, i probably wouldn't have got sucked into some of the profoundly unpleasant ideologies i spent much of my teenage years in, and things within my family very probably wouldn't have been as fucked up as they were (in ways that were not exactly anyone's fault, although i spent a long time blaming my parents and a longer time blaming myself for much of it) - but then, if i had been diagnosed as a child, would the educational ambitions my parents and teachers had for me have been "downsized"? Would i have ended up in some sort of "special" school instead of the selective-by-educational-ability grammar school i did end up in, and would i have had the ambition to go to university? Would i be a part of intellectual community now? More generally, would i have had the sustaining belief that i could, or at least had the right to, be as independent and achieve as much as any neurotypical person, or would i have "accepted" my inability to know what was best for myself? Would i have been better off with a better knowledge of my own limits, or was my lack of understanding of those limits at certain crucial stages of my life necessary? I strongly suspect, therefore, that while some aspects of my life could well have been much better with an early diagnosis, other aspects of my life could well have been much worse, and, of course, it would be impossible to ever fully know.

So, i'm interested in what other people on the spectrum, or people with friends or family members on the spectrum, think of these photographs - when you look at them, do you instantly see an autistic person? If someone whose child you hadn't met showed you those photos, would you guess that the child was autistic? And, more generally, do you think autistic people can reliably identify other autistic people by looking at them? (As an adult, i have been told both that my "Aspie mannerisms" were obvious before i said anything about my diagnosis, and that me saying i had an AS diagnosis was surprising because it "really wasn't obvious". I actually think i have become somewhat more obvious in the last few years, since discovering autistic community, because many of the semi-conscious ways of repressing my natural mannerisms and imitating neurotypical ways of moving, facial expressions, etc have "worn off".) And did anyone else who was diagnosed as an adult have similar experiences of finding it hard to believe they were never diagnosed as a child, because it was really obvious?

I need to write some stuff about diagnosis and labelling more generally, but i think that's an interesting discussion starting point. (Also, credit is, i think, deserved to AnneC of Existence is Wonderful for partially inspiring this with a post based around photos of and by her at a similar age...)

I won't be posting tomorrow or Saturday because i'm off to London for a conference and a friend's birthday. But i will hopefully have time to post daily-ish for the next week or so from Sunday...

Disability Terminology: too much confusion, so much frustration (for BADD 2009)

2009-05-01T23:15:00.005+01:00

This was meant to be a post for Blogging Against Disablism Day 2009, but as it will almost certainly be after midnight by the time it's posted, it might not (officially) be. Also, as quite a few other unwanted and stressful things have happened to me today, it might be a bit disjointed, as i've expended quite a few more communication spoons today than i was hoping to have to... so i may try to revise it a bit afterwards.

The topic of this post was prompted by a conversation the other night: the language of disability and disability oppression, and how frustrating the contradictory and overlapping usages can get, especially when the international status of English as a language is involved. "Disablism" itself is a case in point...

"Disablism" is primarily a UK usage (although i think i have seen some people from the US using it). The corresponding word used most of the time in the US is "ableism" - as, for example, in this recent post by anarchafemme. (I'm not sure about what's common usage in other English-speaking countries, but searching Canadian Elizabeth's blog gets results for "disablism" but none for "ableism", whereas searching Australian hexy's blog gets the opposite... so, Canada as UK, Australia as US?) This is somewhat confusing, especially for the literally minded, as those two words look like they should mean the exact opposite of each other - but are used to mean (roughly) the same thing.

Last year for BADD, Lisy Babe explained her reasons for preferring "disablism" over "ableism" - which at first i fully agreed with, but then i read this comment and found the argument in the opposite direction there equally convincing... so, bleh. I think i will stick with "disablism" simply because it's the generally accepted usage in both academic Disability Studies and disabled activist circles here in the UK, rather than out of any strong ideological preference one way or the other.

I have much stronger preferences about the "correct" usage of the term "disability" itself. In fact, i think misleading or ambiguous usage of the terms "disability" and "disabled" is one of the biggest barriers to a wider cultural understanding of disability issues and to the recognition of disabled people's oppression (whichever term you use for it) as a "valid" oppression, real and analogous to racism, sexism, homophobia, transphobia and the rest of them. (Although, of course, as i've said before, all those oppressions also routinely get not treated as "real" or "valid", and "last acceptable prejudice" rhetoric is, IMO, not helpful.)

(Another aside here - there really isn't consistent usage in English for naming oppression. We have words ending in "-ism", like racism and sexism, which is a widely recognised enough construction that more recent coinages like "sizeism" and "ageism" are easy to understand as analogues, and then we have words ending in "-phobia", like transphobia, homophobia and xenophobia (which overlaps with, but isn't quite identical in meaning to, racism), which is also well-known enough that analogous coinages like alterophobia are reasonably easily understood - this despite the fact that most other words ending in "-phobia" describe irrational fears or aversions that have nothing to do with oppression or prejudice, and of course there are dozens of different types of constructions with the suffix "-ism", ranging from political ideologies (anarchism, socialism, libertarianism, nationalism, etc) to medical-originated words for impairments or physical conditions (autism, albinism, dwarfism, etc)... and then there are debates about whether the better word for prejudice against women is "sexism" or "misogyny" (which introduces a third "mis-" construct, tho the only words i can think of right now using it are "misogyny" and its counterpart "misandry"), etc. So arguments for using either "ableism" or "disablism" based on consistency don't work either way. It would be an interesting thought experiment as to whether understanding of prejudice and oppression in the English-speaking world would be better if the terms for it were all analogous and consistent...)

For a start, there's the often-misunderstood distinction between "disability" and "impairment". In UK activist usage - deriving primarily from the social model of disability as developed by socialist disability theorists such as Colin Barnes and Mike Oliver in the 1980s - "impairment" is the word used to describe a difference in body or brain resulting in it functioning differently from a "normal" person's (eg. autism, cerebral palsy, a spinal injury, bipolar depression, a missing eye, a missing leg, etc), whereas "disability" is used to mean the social disadvantage resulting from society's failure to accommodate that difference (eg, "not being able" to access public transport due to lack of wheelchair access, not having access to books because they are not published in audio as well as print editions, being "unable" to communicate one's needs effectively due to social assumptions about verbal and nonverbal communication, etc). In practice, however, because the social model isn't widely understood (or even heard of, even sometimes among disabled people), the word "disability" very often gets used to mean "impairment" - someone asking of a person "what's your/hir disability?", for example (and expecting an answer of, say, "muscular dystrophy" or "spina bifida").

To make things worse, internationally the usages conflict and contradict one another - for instance, i've often seen it stated that the "standard" US usage is to use "disability" for what we in the UK would use "impairment", and "handicap" for what we would use "disability". From what i've observed online, the usage in the US disability rights movement is actually rather mixed - some use the "disability/handicap" terminology, but a possibly increasing number (especially, i think, of younger activists) use the "impairment/disability" terminology. I have seen attempts to synthesize the conflicting usages by trying to develop a 3-layered terminology, in which "imapirment", "disability" and "handicap" all have distinct and defined meanings - however, i'm not sure precisely what those distinctions are where such terminology is used.

(Edit: i found here the World Health Organisation's definitions:

'An impairment is any loss or abnormality of psychological, physiological or anatomical structure or function; a disability is any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being; a handicap is a disadvantage for a given individual, resulting from an impairment or a disability, that prevents the fulfilment of a role that is considered normal (depending on age, sex and social and cultural factors) for that individual'. - so, for me, both what the WHO calls "impairment" and what it calls "disability" would fall under "impairment".

The extent of the confusion is made even clearer by the fact that the "About us" page of that website uses both the phrases "handicapped people" and "people with disabilities" - to describe the same people... i'm not even going to get into the "people with" debate here...)

Something i find both politically important, and often useful in explaining social model usage, is that the word "disabled" is not, linguistically, an adjective, but instead the past tense of a verb - "to disable". Therefore, in phrases like "disabled people", the word "disabled" does not refer to an inherent characteristic of a person (as an adjective relating to impairment, such as "autistic people" or "blind people", would), but implies that we are people who have been disabled - it describes not us but what society has done to us. Thus, it's analogous not to, say, "black people" or "female people", but to "people oppressed by racism" or "people oppressed by sexism". In fact, because of this, some people have argued that "disablism" is actually a redundant term for describing oppression, and that oppression should simply be termed "disability" - or, perhaps more accurately, and as used by Mike Oliver in his most famous book, "disablement".

(It's also interesting that, in early-modern works of political theory that i read in the first year of my politics degree, by the likes of Jeremy Bentham and John Stuart Mill, phrases like "the disabilities of women" were common, referring to legal and social disadvantages, which could be seen as using the term "disability" in a completely social-model sense, centuries before the fact and without even any reference to impairment...)

Then comes the categorising of impairments, and terms get even more confusing. Generally speaking, "visual impairment" and "hearing impairment" are pretty universally accepted terms - i don't think i've ever heard anyone use the phrase "visual disability" or "hearing disability". However, "physical impairment" and "physical disability" both seem to be used pretty commonly and almost interchangeably (although use of the former rather than the latter may, tho it doesn't always, indicate a slightly higher level of understanding of the social model and the difference between impairment and disability - it's still not uncommon, even in disability activist circles, for people to say "ze has a physical disability" or "hir disability has got worse", tho).

When we enter into the field of mental impairments (and even the umbrella phrase "mental impairments" is regarded as an unacceptable usage by some), it almost totally breaks down. The term "impairment" is almost never used in reference to mental health/illness - the only people i have heard use it in that context being people with mental health conditions who are/were involved in pan-impairment disability activism/disabled community, and more often than not had other impairments as well.

There is a huge and hideously complex debate around whether the term "learning disabilities" or "learning difficulties" is the more appropriate one, yet, strangely, i have practically never heard anyone seriously suggest the use of the term "learning impairment" - even though that would seem to me both to be much more consistent with the social model and to have the advantage of more obvious analogy with "visual impairment", "hearing impairment" and "physical impairment". None of the reasons i have seen given for the preferential usage of either term over the other have seemed convincing - a typical example is People First's reasons for using "difficulties" rather than "disabilities", which seems to me to be composed pretty much entirely of non sequiturs. ("Learning disabilities" and "learning difficulties" both also seem to be used almost exclusively in the plural, even when referring to a single person, which i don't really undertstand the reasons for.)

There also seems to be argument and disagreement over who is covered by the category of "learning disability" - sometimes, especially in the US, it seems to be used primarily to cover people with conditions such as dyslexia or dyspraxia (which in the UK are categorised as "specific learning disabilities, with seemingly an emphasis on the "specific" to avoid association with the more-stigmatised category of "learning disabled"), whereas the general assumed category in the UK is people who have "generalised" intellectual or cognitive impairment (if that even truly exists, and hasn't been shown, like IQ, to be a false category, or broken down into distinct and discrete syndromes or conditions - i mean the type of cognitive impairment that, for example, most people with Down's syndrome tend to have). "Cognitive impairment" and "intellectual impairment" are also ambiguously used phrases, and i still haven't really got a clue what "developmental delay" means - although i know that "pervasive developmental disorders" covers autism and related conditions, and "developmental disability" seems to be another primarily-US term with apparently about the same meaning as "learning difficulty" (as used by People First UK and those who follow their scheme of definitions).

Then there are the members of various impairment groups with their own identity politics who don't want to be identified with the term "disabled"; the 3 impairment groups i am most aware of this happening with are autistic people, deaf people and dyslexic people (although i am sure it happens in other groups as well - i'm aware of something parallel in the mental health system survivors' movement, for example). This often comes from a lack of understanding of the meaning of the term "disabled" in the social model of disability (or sometimes a grasp of the social model, but only with relevance to the disability experienced by one's own impairment group, and not by any others), but can also come from attempts to define one's own biodiversity as not impairment; proponents of deaf culture, for example, argue that they are not a group defined by impairment or disability, but a cultural and linguistic minority (which, it has to be said, many other people with hearing impairments or dual sensory impairments are strongly opposed to). Similarly, certain parts of the autistic rights movement insist that autism is not an impairment, but a "neurological difference" (which can have the effect of alienating autistic people who do experience aspects of their autism as impairing - i've somewhat covered this before, but need to cover it in more detail). I'm aware of several universities in the UK who have student groups with titles like "Disabled and Dyslexic Students' Forum" or services for "students with disabilities or dyslexia", because so many dyslexic people do not identify as "disabled", or object to dyslexia being categorised as "a disability".

There is a part of me that feels that the terminology we use to refer to concepts doesn't really matter, as long as we understand the concepts themselves and are able to work together despite linguistic differences on achieving the same goals in our activism; this part of me is reinforced by my knowledge that all language is ultimately arbitrary anyway (trace etymologies back as far as you like, and still eventually, except perhaps in cases of onomatopoeia, you'll end up with a word with no inherent link between its sound or the shape of its letters and the thing it describes). There is, however, another part of me that feels that, arbitrary in origin as it may be, the use of the "right" language is important, both because language shapes meaning, and because, if we don't have the same understanding of language, then arguably we can't have the same goals in terms of action, because we will percieve the same stated goals differently (and people who think they are working together on the same thing may end up actually working for very different aims, because their interpretations of the same conversation were different due to their different understandings of the meaning of crucial words). Alliances have both been well-intentionedly but naively formed between groups with opposite aims (eg. "user-led organisations" formed by people with very different definitions of who constitutes a "service user") and have been broken between groups who really ought to be working together if they want to get anywhere because of this.

I don't have any answers here, or any suggestions about which terminology i think people should use (although i do have terminology that i prefer to use, and i think in some cases there's only one viable alternative to ensure mutual understanding, eg. in the academic world of Disability Studies where the works of Barnes, Oliver, et al are foundational texts). Just like with the gendered pronoun issue, any particular usage i could propose almost certainly wouldn't catch on anyway. I do think, tho, that even though "playing with words" is often seen as something trivial and detracting from the true struggle, and "semantics" is used as a derogatory term to invalidate arguments, if we are to be successful in fighting against disablism then we have to be clear among ourselves, and able to easily explain to others, what it means...

Recent Links of Awesome #4, and a self-set challenge

2009-04-29T23:19:00.004+01:00

Another link roundup, as i haven't posted in a while...

Breaking news, via FRIDA, cripchick and various Facebook friends* - at least 91 disabled activists from ADAPT (the US's equivalent organisation to DAN) were arrested yesterday outside the White House, and another 99 today on Capitol Hill, protesting against the institutionalisation of disabled people in nursing homes and for Medicaid (the US's "safety net" healthcare system for poor and disabled people) to cover the costs of employing personal assistants to live independently in the community as well as those of "care" in "care homes". This is incredibly inspiring (in the true, good way, not the bullshit "inspirational" way!) - especially from a UK perspective, the sheer numbers of disabled people getting out on the streets and taking organised, high-profile, risky and radical action are amazing.

We really need a movement like this in the UK... oh well, we're getting there... ;)

Youtube video of yesterday's (Monday's) action here...

*Yes, i'm on there. I only add people i know in real life. If you're reading this, and you're someone i know in real life, and you're on Facebook but not on my friends list already (which, tbh, i think is pretty unlikely, but you never know), then feel free to add me (er, i'm presuming that if you are all those things, you know my real name)...

I haven't blogged about much pure political theory (anarchism, socialism, libertarianism...) stuff recently because i've not had quite the right kind of verbal spoons for that very abstract type of thought, but i have been attentively reading stuff on the subject, and particularly liked (even if not felt able to coherently respond to) several recent posts by Rad Geek (aka Charles Johnson):

"Hoverbikes", on the false dichotomy between anarchist localism/decentralism and creative use of technology;

"Fight the powers that be", on "the reasons why a thick conception of libertarianism — or just a realistic assessment of the human predicament — recommends a left-libertarian strategy of connecting radical libertarianism with a thoroughgoing form of psychological, institutional, and cultural anti-authoritarianism (as a general thing, and also when it comes to specific forms and markers of privilege and subordination, like bossism, patriarchy, heterosexism, white supremacy, et al.)";

and this open thread on "localism, decentralism, anarchism, thick conceptions of libertarianism, and the U.S. Constitution", which is incredibly long (i haven't even read to the end), but an awesomely detailed and high-level discussion, containing far too many spinning and whirling ideas to hold coherently in my brain at any one time.

An awesome new blogger i have just discovered is Anarchafemme (who i actually thought, from hir* description of hirself as "a chubbers, trans/genderqueer femme with disabilities, anarcho-syndicalist, vegan, polyamorous slut" might have been a real life friend of mine, until i saw hir location as being in the US).

Particularly awesome and powerful posts from hir blog "Memoirs of a Genderqueer Femme Anarchist":

Musing on Smashing the Gender Binary

Ownership of Bodies

I Hate To Say "I Told You So"... (the best takedown of the hype surrounding Obama that i've seen so far)

Ablism In Radical Spaces (which is a topic i really need to blog on... and, yeah, i can't link without saying i strongly prefer the usage "disablism" over "ablism", but, that aside, i agree with everything there, and of course language and usage is a huge UK/US thing...)

*Anarchafemme, if you're reading, please correct me if i've used the wrong pronouns - i think i saw you saying somewhere that you preferred gender-neutral pronouns, but now can't find where you said that, so apologies if i mistook you for someone else...

And lastly, for those who are into webcomics, Digger by Ursula Vernon is one i've discovered recently which i've been finding pretty damn awesome (and i don't usually like either black-and-white comics or anthropomorphic animals, especially when mixed with humans... but, nonetheless, Digger is awesome).

Also, i've been pretty pissed off with myself for not writing anywhere near as much as i've wanted to recently, so i've (somewhat tentatively) decided to set myself a challenge in May to try to overcome that. I'm not doing an official NaBloPoMo, because a) i'm almost certain that there are going to be at least a few days when i don't manage to write anything, due to, well, all the other things going on in my life, and b) i know that at least a few of the things i want to write won't be blog posts, but my aim is to write something significant every day in May. So expect more frequent (if perhaps consequently shorter) posts over the next month, and possibly longer if i pick up longer-term momentum - and wish me luck...

(And, yes, i really need to update my blogroll. And layout. I am going to get round to this at some point soon.)

Oppression Olympics... literally.

2009-04-15T00:43:00.004+01:00

ABFH posted recently about a Special Olympics poster campaign called "Spread The Word To End The Word". Her post concentrated mainly on the motives of the advertising agency, but here i want to address the poster campaign itself.

The aim of this advertising campaign is putatively to "make people stop and think about their hurtful and disparaging use of the word “retard.”" - however, i think there are several ways in which this advertising campaign is deeply flawed, and is, in fact, arguably offensive and oppressive to disabled people in itself.

The posters (which can be seen online here, here and here) are certainly striking and powerful - I do have, on one level, admiration for their boldness and shock value, and i think the point they are trying to make is, from a certain standpoint, a valid one - however, i think that standpoint is a naive and unexamined one. This gets me into complex knots of identity politics and standpoint theory of the sort that i always struggle to articulate, but i'm going to try, and hope i make some sense...

The first thing that struck me when i saw the posters was the open use of racist (primarily) and homophobic insults on them - in 2 of the 3 posters, without censorship of the racist and homophobic terms, and in the other one with those terms censored but "retard" uncensored. I very much doubt that the first 2 posters would even be allowed by the Advertising Standards Agency in the UK (and that's not to make the UK out to be less prejudiced than the US, or to say that the ASA isn't hypocritical or fucked up - they seemed to have no problem with this shit, for example) - the obliviousness of whoever made them to the effect that seeing them could have on members of the groups who were slurred uncensored on them (Chinese people, gay men, African-Americans and Jews, respectively) is breathtaking. The remaining poster, in removing the vowels from the racist and homophobic terms (while still leaving them obvious enough to have the same effect on members of the groups attacked by them - African-Americans, Latino/as, and gay men again) but not from "retard", is arguably even more offensive by falling hideously blatantly into the "last acceptable prejudice" trap.

The second thing that struck me was the visual imagery - which i concede has a powerful aesthetic that i like in purely visual terms. However, two things strike me about it - firstly, that the whole visual point hinges around the visually obvious facial appearance of people with Down's syndrome, thus equating all cognitive impairment with that one condition (which also spreads the false, but common, conception that cognitive impairment is something immediately and obviously "visible"); and secondly, how strongly the imagery draws on tropes of fear and horror, referencing horror cinema to portray (whether intentionally or not) disabled people as frightening and monstrous. (I'm not sure what horror film(s), if consciously any, the first poster references, but the second clearly references the "classic" film depictions of Frankenstein's monster to me, and the third J-Horror films such as The Ring). While i think there is an incredible amount of subversive power in disabled people reclaiming such imagery (some great short film examples from the UK disability arts movement here and here), this doesn't feel like that to me - it feels more like it is simply putting out the message "disabled people are scary and shocking".

(Also, i can't help wondering what effect seeing those adverts would have on people with cognitive impairments who, due to those impairments - for example, someone who is unable to interpret language non-literally - wouldn't "get" the intended nuances of shock value, but would still "get" all too well the use of hateful words and scary images - i can easily see some people, on first impression (which may be all they get) seeing these adverts simply as a socially-sanctioned, brutal disablist attack on themselves...)

As for the comparisons, well, this post by the ever-awesome Eli Clare - inspired by a previous Special Olympics advertising campaign - makes all the points i want to make far better than i ever could - i could quote the whole thing, but i'll just quote a couple of bits of it:

1) The violence has already been done. The damage won’t be rectified by a refusal to say the words. In our activism and analysis around hate language, we need to be vigilant and conscious about triggers and re-creating the power dynamics put in motion by hate language, but I’m not sure that euphemistic substitutions for hate language is a good stand-in for vigilance and consciousness. At the bottom of this part of my ambivalence is a sense that the “r-word” construction is designed largely to protect those of of us who have been battered by the word retard and by the institutional, material, and attitudinal realities that come with it. As one of those people bruised by the dismissiveness, hatred, and physical violence of retard, I don’t need protection; rather I need compassion, rage, allies, and an end to ableism.

In the light of this, there is a clear contradiction in the current Special Olympics campaign - their motive in trying to eradicate the word (and, it seems, only the word, not necessarily the ideology or systemic injustice behind it) is, consciously or not, "protection" - which is fundamentally patronising and paternalistic - yet the posters used for that have the exact opposite effect, precisely the kind of re-victimisation in Clare's second sentence.

2) The “r-word” construction mirrors the “n-word” construction, which precedes it. I don’t know from where the “n-word” construction originates nor what mix of opinions/feelings/thoughts Black people have about it. But whatever the origins, the mirroring of the two constructions communicates that retard and nigger function in the same ways as hate language and carry the same violence and that all the repulsion and outrage white people supposedly feel upon hearing the word nigger should also be felt in the same measure by non-disabled people upon hearing retard. Here again is analogy failing to do the deeper work of intersectionality. Certainly racist hate language and ableist hate language share much in common. (The ways the word monkey has been used against disabled people (both poc and white) and people of color (both disabled and non-disabled) highlight these commonalities.) But there is so much historical and present-day difference between the usage of retard and the usage of nigger and such a lack of real anti-racist work among white disability activists that the analogy reads to me like white people appropriating the political work of Black activists yet again. The analogy sidelines Black disabled people’s experience, and assumes that disabled people are white and Black people are non-disabled. And the question isn’t asked: how does the snarl of hate sound in the lives of disabled people of color?

Now, "appropriation" is generally an area of discussion i avoid, because i find it incredibly difficult to get my head round what constitutes "appropriation" and what does not; i don't know how far one can take an analogy before it becomes appropriative, or even if ultimately it's appropriative to draw analogies between different oppressions at all (and, if so, is appropriation even avoidable, considering that for any analysis of oppression whatsoever, there's going to be one oppressed group that "got there first" - and that's particularly relevant when talking about disability, because it's historically undeniable that disabled people's oppression was, in most cases, one of the last categories of oppression to be recognised as such). But Clare is absolutely right that this is all about the feelings of the privileged group of people - the feelings of the actual people directly oppressed by the term "retard" don't even seem to be taken into consideration.

But since when is the Special Olympics about justice for cognitively disabled people? For many years that organization has been one of the biggest creators of super crip images–that is “heroic” disabled people “inspiring” audiences with their “bravery”–and and have often fanned the flames of pity with its charity-model fundraising. Even the name Special Olympics sets up a charity-model context, rather than a social-justice-model context. I believe that an organization that frames disabled people as inspirational and/or objects of pity is also setting the stage for the unquestioned use of retard. If the Special Olympics is serious about its r-word campaign, it has a lot of internal work to do.

And, of course, here the patronising and paternalistic nature of the "protect the vulnerable disabled people from hate speech by eradicating words, even if not what lies behind them" campaign makes perfect sense, because the Special Olympics is a fundamentally patronising and paternalistic organisation.

I believe that there is an unexamined but deep-seated disablist ideology behind even the "non-special" Olympics, and in fact all competitive sport, but i don't have time to go into that here. However, in its relative (if not absolute) uncompetitiveness, and emphasis on "develop[ing] self-confidence, social skills and a sense of personal accomplishment", another level of patronising disablism is revealed - whether in the idea that cognitively disabled people "can't take" losing and thus need to be protected from it, or that they don't have a realistic chance of winning in a genuinely competitive environment. (It's also noteworthy that the Paralympics - which has the same unashamedly competitive outlook as the "normal" Olympics - does not allow "intellectually disabled" athletes to take part, whereas the Special Olympics is solely for those with cognitive/intellectual impairments, reinforcing divide-and-rule segregation by impairment and encouraging "we might be impaired in X, but that doesn't mean we're impaired in Y, like them" attitudes on both "sides"...)

I believe that comparing disabled people's oppression to other oppressed groups' oppression in order to make people realise that it is oppression does have its value and its place (see my comments to cripchick's posts here and here, for example) - but this is an example of spectacularly missing the point... an advertising campaign aimed at combating hate speech which, for many people - even arguably including the very group it's meant to oppose hate speech against - is hate speech. Pointing out oppression that most people are unaware of is shocking - arguably, if you aren't shocking people, you aren't doing it right. But doing it in ways that hurt the oppressed more than the privileged is not cool at all.

Best post on adult AS diagnosis ever?

2009-04-13T22:52:00.003+01:00

Via hexpletive, an utterly amazingly awesome post on adult AS diagnosis and neurodiversity and other anti-oppression activism by a blogger i wasn't previously aware of, feminist and fat acceptance activist Meowser (who i may have to add to my blogroll)...

I don't really know what else to say about the post except READ IT, really... except that, despite being a different sex and a couple of decades younger than Meowser, practically everything in that post is almost word-for-word true of me.

A few choice quotes:

"Asperger syndrome?" I said. "No, I don't think so. I like affection. I'm not a slave to routine. I'm SO not into straightening and tidying things. I don't care all that much about computers."

...

Couldn't catch or hold a ball to save my life? Check.

Had no idea when it was okay to bend the rules, even for something trivial like chewing gum in class, and when it wasn't, because I was always positive I'd be the one to get caught, try to swallow my gum, and puke it up in front of everyone? Check.

Had a bedroom that looked like Axl Rose and the Tasmanian Devil were roommates in it, except for a record collection that was always carefully organized not just in alphabetical order by artist, but arranged by dates of release when I had more than one album by the same artist? Check.

Was almost comically uncoordinated and dropped things and banged into shit and knocked over glasses full of liquid like a 1-year-old? Check, check, checkerooski.

...

I'd lost friend after friend. Job after job. Roommate after roommate. Lover after lover. Just lost them and lost them and lost them, in ugly ugly ugly ways, even though I tried so hard to be good. Once in a while, when they could bring themselves to, they'd tell me why I was losing them.

Lisa said you were staring into space for ten whole minutes and not doing any work. I'm going to have to write you up.

Didn't you see me look at you? Couldn't you tell you were annoying the crap out of me with all that blathering about your issues?

You call this clean? Did wolves teach you how to wash dishes?

The way you stare at me, it's just so weird, I can't take it.

Error after error for which I could never be forgiven, even after apologizing and apologizing and apologizing and busting my ass to do better. Once people decide to wash their hands of you, that you're just too odd to be worth the effort, that's pretty much it.

But mostly they wouldn't even tell me. I'd just be frozen out, without another word.

God, if only I had known, I could have told people, could have told myself. They and I would have had at least a few clues ahead of time about what to expect. I wouldn't have kept trying to fit where I didn't fit, do what I couldn't do, make it okay when it never would be, tell myself I could make it work, everybody else does, I have no excuse.

...

The "treatment" I was to undertake now, under Jane's tutelage, consisted of understanding that this was the brain I had, it was what it was, and learning how to explain myself to people when the situation called for it and stop expecting myself to function like a neurotypical (NT) person -- that is, someone not at all autistic. Because I'm not like them, and no amount of TRY HARDER HARDER HARDER was going to make me become like them. And of course, learn to appreciate the unique and special ways in which my mind did work, and understand that I was not a failure, that I had been discriminated against for this for decades and not only didn't I know it, but the people who instinctively recoiled from me didn't even know why they were doing it, for the most part.

... but, please do read the whole thing - it's long, but it's worth it...

(and there is stuff in there, especially towards the end when she talks about privilege, that is so me i'm not even sure i'm able to coherently talk about it - tho i want to, and perhaps at some point i will, tho i've tried to write about the same stuff many times and never even got close to putting it into words which i felt reflected my actual thoughts and feelings... blah. Maybe one day.)

Proper posts from me... soon, honest. Have been stupidly busy... and will be for the next week as well, as i'm going to this conference (primarily to run a DAN stall), but i really will start posting more frequently, as soon as i have a couple of days with time to blog in a row...

Biodiversity in the City #1: Crow

2009-04-06T23:40:00.004+01:00

I realised recently that i haven't a) posted any of my own photos recently, and b) haven't posted anywhere as near as many posts of my own photos overall as i intended to when i started this blog. So, as i got a new camera recently (well, at Christmas) which is quite a bit superior to my old one (10x zoom and 8 megapixels as opposed to 4 and 5 respectively), i thought i'd start a series of wildlife photo posts (it's also a bit of a respite from intellectually and emotionally heavy disability-identity-politics type posts)...

However, being me, i can't help linking things together, and i've noticed a synchronicity in my recent photo-taking walks of one of my perennial interests: animals that are visually unusual for their species (I blame all the Jack London and Herman Melville i read at a very early age... with a bit of awareness of my own atypicality mixed in there too) - hence my "Biodiversity in the City" posts will focus on that...

I've posted before on the crows in Birmingham that often have some white in their normally black plumage. With my new camera, i recently got some photos of one that were much clearer than the blurry photos i got with my old camera back in 2007 (it's also a different crow, as you can tell both from the different pattern of white feathers and it being on the other side of Birmingham to the other one):

OK, they are still a bit blurry. Much better at comparable distance than my old camera, tho...

(and my random Wiki-surfing has found an extinct subspecies of raven with a fascinating similarity to my observations of crows in Birmingham - the pattern of the type specimen is remarkably similar to my 2007 crow (although i know that one was a Carrion Crow). Could the conditions in a city cause a similar "genetic drift" phenomenon to those on a small island? All sorts of incredibly interesting thoughts about genetics, evolution and diversity there... damn, i wish my biology was less rusty... maybe some day i'll write the out-there fusion of biology, ecology and sociology that i have somewhere in the back of my mind about human and nonhuman biodiversity in urban environments...)

Anyway. Darren Naish and Loren Coleman probably also deserve inspiration credit for this. Coming up: diversity in pigeons, ducks, geese and coots...

Massachusetts... WTF???

2009-04-04T22:11:00.003+01:00

When i first read this, i thought it had to be an April Fool's joke (albeit a somewhat offensive one... but one that i would possibly have found funny) - but confirmation from several other sources (such as Body Impolitic and Trinity) has proved to me that it is in fact true:

Massachusetts State Representative Kathi-Anne Reinstein (I'm not totally up-to-date on US legislative stuff, but i'm presuming she is an elected member of the state (as opposed to federal) legislature) has proposed a state-level bill banning distribution of any naked images of any disabled person or any person over 60 - and which explicitly equates any such images with child pornography.

The implications of this are horrific - it implies that any person over 60 or any person with "a permanent or long-term physical or mental impairment that prevents or restricts the individual’s ability to provide for his or her own care or protection" is equivalent to a child in being inherently incapable of consenting to sex or to being photographed naked. This would even apply to disabled people or people over 60 distributing naked images of themselves.

Now, i have spoken to several USians who have assured me that this bill is almost certainly federally unconstitutional and therefore could never be passed (or, if it was, would be struck down by federal authority overriding state authority, or something like that... again, not very sure of US politics here. Yes, i did this stuff at uni. No, i don't remember it...) But the fact that it even got to the stage of being put before the legislature - and, apparently, with the approval of Massachussetts-based disability organisations - is horrific enough.

According to this report, the bill was prompted by a series of cases of nonconsensual sexual exploitation of disabled people, involving nonconsensual photography. However, these kinds of sexual abuse are already crimes, and criminalising consensual images will almost certainly have no effect on them. Equating all sexual images of disabled people with nonconsensual abuse removes all agency from disabled people, and fits right into the insidious (and all the more oppressive for its not being percieved by the general public as oppressive) paradigm of disabled people as inherently "vulnerable", and therefore in need of "protection" that overrides our own choices and wishes - one of the nastiest forms of paternalism. This proves that, in the minds of people in powerful positions like state legislators, disabled people are not fully adult, not fully human.

(This bill would make Sins Invalid illegal in Massachusetts, and much of the work of Mat Fraser, and so many more incredibly awesome, vital, powerful works of the disability arts and disability culture movements... not even to mention the many mainstream films which have featured naked scenes by actors over 60...)

This is why i am a supporter of the Consenting Adult Action Network - not because i am particularly "pro-porn" (in fact, i'm pretty much entirely indifferent to porn - although i can certainly aesthetically appreciate nude or erotic images of attractive people, watching other people actually doing sexual acts is something that i'm simply not at all interested in - if anything, the only effect it has on me is envy at my own lack of opportunity for such activity) - but because anti-porn laws not only restrict free speech, but (much more importantly for me) deny people agency over what they do with their own images and, ultimately, their own bodies. This is one of the most fundamental freedoms that all human beings have - and a law specifically denying it to disabled (and older) people is nothing more and nothing less than institutionalised discrimination and hatred.

(For how hatred of disabled people can differ superficially from hatred of other minorities in ways that can prevent it from being seen as the hatred it is, see this previous post on hate crime.)

For these reasons, it's no surprise at all to me that disabled people and disability activists are extremely prominent in the movement for sexual freedom and autonomy (both in online discourses - e.g. on blogs such as let them eat pro-sm feminist safe spaces and SexAbility - and in offline activism such as CAAN) - fighting against paternalism and for bodily autonomy and acceptance of all adult human beings as capable of being fully consenting agents is completely central to the disability rights movement.

(The Sexual Freedom Coalition is also IMO worth linking here...)

Disabled people are routinely denied any kind of sexual agency or recognition as sexual beings whatsoever (see Dave Hingsburger's blog for far too many examples). I'm not going to try to address the thorny question of whether sex (defined as involving sexual interaction with another person) is a "right", as i really have no idea how to answer the questions of whether something that requires the consent of someone else can be a right, or of whether it's possible for something to be a need but not a right - but sexual expression undoubtedly is a fundamental freedom, in the same way that any other kind of self-expression that doesn't harm others (and no, offence is not harm) is.

I'm glad that this law is unlikely to be passed, but, to my knowledge, if such a bill was to be proposed in the UK (which does not have a Constitution like that of the US to protect "free speech"), there could well be nothing stopping it from being passed here. (The Criminal Justice and Immigration Act 2008, which banned "extreme porn" in the UK, would very probably have been unconstitutional in the US on the same grounds as this Massachusetts bill.) This is our fight, whether or not we want to see it as such...

The reason i haven't been blogging much recently ;)

2009-04-01T01:00:00.006+01:00

(the difference from my usual writing style is due to the fact that i wrote this for Indymedia...)

Yesterday (Monday March 30th) the Disabled People's Direct Action Network (DAN) occupied the main entrance of Louisa Ryland House (Birmingham City Council's main housing and social services office) over the way that disabled people are treated by the council.

Around 20 activists, who had come from as far afield as London, Leeds and Manchester, marched from the city centre (pausing only for a photo opportunity outside the Council House) at 1pm, chanting slogans such as "What do we want? Freedom! When do we want it? Now!" and "I'd rather go to jail than die in a nursing home". Despite the fact that an article about the action had already appeared in that morning's Birmingham Mail, Louisa Ryland House were totally unprepared for the invasion, with not even security guards initially present when DAN entered, chanting "Business as usual - ain't gonna happen!"

We occupied the lobby and blockaded the entrance with 2 wheelchairs chained together (with banners and people handing out leaflets to both council workers and passers-by outside in the street) for about 2 hours before any police turned up - initially it was a pair of "Community Support Officers" who essentially said they agreed with us and walked away, then about half an hour later the actual West Midlands Police came, but were very clearly totally unprepared to arrest a group of disabled people, repeatedly warning us that we were breaking the law (er, we knew that) and that if we stayed we would be arrested... however, they didn't seem to want to get round to it...

(One officer did tell us that it would be "zero tolerance" if we did it again... not quite sure if that's believable! Also amusing was the guy with a huge pair of bolt-cutters who BCC security called in, who essentially took one look at the small and flimsy-looking yet effective chain and left proclaiming it not worth calling him out for...)

At around 4pm, after the police had told him about our protest, BCC's Director of Health and Social Care Peter Hay actually came out to meet us (the other councillors and executives we addressed our demands to were apparently still in their "important meetings"... presumably deciding just how little of their 2009 budget they could get away with doling out to disabled people), and after some negotiation we secured a meeting with him and other representatives of his department on Friday 3rd April, as a result of which we decided collectively to call the occupation off and retire happily to a local accessible pub.

DAN's demands in Birmingham are for accessible, affordable housing for all disabled people (in ordinary streets and communities, not in the ghetto-like "Extra Care" housing developments that BCC is currently building, which will give disabled people living in them "in-house" staff as their only option for providing personal care needs, making them essentially no more than nursing homes under another name), Direct Payments to employ personal assistants (PAs) to be granted to all disabled people who need personal assistance (which it is a legal obligation for all local authorities to offer to all disabled people meeting the eligibility criteria - yet despite this number being in the tens of thousands in Birmingham, only 482 disabled people in the whole city currently get them), and an end to the unjust "care" charging policies which require the poorest disabled people to pay most towards their own "care", driving them even further into poverty.

Birmingham DAN know many disabled people who are literally unable to leave their houses (if they are lucky enough to be housed at all) and living in squalor and hopelessness without the assistance needed for the most basic of daily tasks (such as cooking, housework, and in some cases even dressing and showering) and, even when supposedly having "independent living", lacking any meaningful choice and control over our own lives. We demand true independent living (as defined according to the Social Model of Disability, meaning not "doing everything for oneself" but "having control over one's own life") and self-determination for all disabled people under the principle of "Nothing About Us Without Us"!

The Birmingham Post and Mail (2 local papers owned by the same company) both covered us, with slightly different photos and stories, but the latter printed the ludicrous claim on behalf of Birmingham City Council that “We’ve always maintained we are happy to meet with DAN representatives and discuss their concerns.” - well, if that was the case, we wouldn't have had to take direct action, would we?

BCC also exposed just how far they are from reality by openly admitting to the press that "the average waiting time for priority [housing] adaptations is 58 weeks" (yes, over a YEAR), as if that was something to be proud of... what planet are they on?

It remains to be seen what, if anything, will come of the meeting between DAN and Birmingham City Council on Friday, but we will assure them in no uncertain terms that if they continue to fail to meet their legal obligations to accessibly house and grant Direct Payments to disabled people, we will be back!

These issues are not just present in Birmingham but nationwide. After a relative absence for the last few years, DAN is rising up again to highlight and bring to an end these injustices. "When we are under attack - disabled people fight back!" Councils, charities and any other organisations which oppress disabled people around the country - watch out for forthcoming DAN actions near you...

Another report by a friend and comrade is here (some different photos).

There's also a video on YouTube by another friend and comrade (and another one, with captions, in the process of being edited, which will probably be uploaded to YouTube in the next couple of days).

The local paper coverage, including a short video, is here (and, yes, they did misspell my surname... as well as quoting me as having said something i definitely don't remember saying in those exact words - but that's commercial media for you...)

Edit to add - another activist-made video is now on Youtube here...

"Disabled have no right to choose carers"

2009-03-29T21:25:00.003+01:00

I wanted to write a long post about this, but am, it turns out, simply too busy. (Hopefully, fairly soon i will be a lot less busy, and will be able to get back to blogging properly. Apologies for my relative absence in the last couple of months.) Anyway, my friend Clair has posted on it, more succinctly than i could.

There's a hell of a lot here to unpack about what exactly constitutes "medical care" versus "social care", and the construction of the whole concept of "care" itself, which i'll have to return to in another post. Suffice to say for now, this is the sort of utterly vile injustice that routinely goes unquestioningly accepted, not even recognised as a "problem", because of the level of power and... i'm not even sure if there's a word for this, but... standing as something that simply Is, immutable and unquestionable as the laws of gravity, despite its being entirely socially constructed... that medical authority has in Western society. There's a paternalism at the heart of so-called "medical ethics" that shudders me so deeply that i would honestly prefer it if doctors and nurses actually were the entirely amoral beings, viewing the bodies of their patients only as a mechanic views the vehicle or other machine ze is working on, that the "pro-life" movement (and often the bits of the disability rights movement mistakenly allied with it, as in my last post) likes to portray it as. The irony is that that "scaremongering", for me, would make the medical profession less scary if it was true.

And i'm already rambling far away from the topic only a couple of paragraphs in, so i'm going to leave it here for now. There is something *big* happening tomorrow, which has been the main reason for my excessive busy-ness and lack of time for blogging recently. My next post will hopefully be a report on it. After that, i should be able to write all the posts i have been intending to for weeks if not months (in a couple of cases, arguably years)...

Also, hopefully i'm finally going to get round to making the changes and updates to my blog that i have been wanting to make for ages relatively soon (the changes in colour and layout made a few months ago were only intended to be a first stage, and possibly not even the final colours). This will include updating the blogroll and other sidebar links as well as trying to turn the look into something i'm satisfied with, so if you're reading this and you have a blog or site that you'd like me to link to, please let me know...

Also, this (by the inimitable cripchick, whose tech and image editing skills, as well as many, many other talents and qualities, i wish i had) is awesome. Go read it. Now.

There is an alternative

2009-03-22T01:29:00.002Z

While idly following links today, i came across this post on religion and end-of-life care at Respectful Insolence...

RI is well-respected as an "anti-quackery" science blogger, and gets a lot of props from the autism community for opposing the "vaccines cause autism" conspiracy theory that is believed in by a hell of a lot of the nastier curebies out there (see ABFH for up-to-date info on that). I believe ze is also a parent of an autistic child and supporter of acceptance not cure, so although i haven't read much by hir, i definitely respect hir.

I don't have any problem at all with the post itself. I am, however, very scared by some of the comments...

The Perky Skeptic posted:

My father just had a stroke and needs round-the-clock care that neither my family (I have to care for my autistic son) nor my brother's family (with two-month-old baby) can provide. We cannot afford private care and he will have to go into a nursing home when he gets discharged from the hospital.

The worst thing, the most horrifying part, is that his mental faculties are intact. He can still talk ballet and opera with me, but his body has given out. I've seen the way the hospital staff treats him (like a five-year-old), and it sends chills up my spine to think how much less respect and care he will receive in a Medicaid-paid-for nursing home.

All this has made me change my mind on end-of-life issues. Medical science is too good at saving lives for my comfort. I would rather die from a stroke than have 911 called and end up surviving, like that, under those circumstances. Seriously-- not only do I want the most aggressive DNR order possible, I also really don't want emergency medical services if I'm over the age of 80. Is there a medalert bracelet for that?

The most chilling thing about this for me is that not only is independent living through personal assistance apparently not an available option for The Perky Skeptic's father, but that neither TPS nor hir father even seems to be aware of the possibility of it. The horrific assumption is that, for someone who has just acquired a physical impairment meaning they require assistance with bodily functions or daily living tasks, the only options (in the absence of immediate family members who are able and willing to completely drop their own lives to provide that assistance) are an institution or death.

This is also about as clear an illustration you can get that - as i thought i'd said here, but re-reading it apparently didn't - the thing that is so glaringly missing from the "right-to die debate" is that many disabled people wouldn't want to die if they had the necessary assistance to live. The "helplessness" and loss of control over one's own life that many if not most people are led to believe comes inevitably with impairment is not inevitable - it's only the norm where a disablist society does not value the autonomy and quality of life of disabled people and does not provide them with the means to retain them. Would TPS still feel that ze would rather die than live as a physically impaired person if ze could be assured that accessible housing and funding to employ personal assistants were available to enable hir to retain choice and control over hir own life, rather than spending the rest of hir life deprived of all liberty and agency in a totalitarian institution?

Somewhat further down the thread, Adrienne said:

As an ex-Catholic and former Opus Dei school student, let me add that I have noticed a belief among the fringiest of the religious right fringe that "palliative care" is basically a synonym for passive euthanasia. They believe "DNR" orders basically allow you to be put down or not given hydration/nutrition.

Even worse, I have seen some wingnuts propagate the belief that doctors are eager to declare the seriously or terminally ill in a "vegetative state" so they can grab these people's organs.

Judie Brown of the American Life League, which is so "pro-life" as to oppose abortions even when the mother's life is in danger, actively warns people not to be organ donors due to her belief that doctors routinely hasten along brain death in comatose people who have volunteered to be organ donors just so these doctors can take their organs while their heart still beats.

and then quoted a disabled writer on a Catholic anti-euthanasia site:

While a hospital is a place of healing and care, it is also a potential place of danger for those of us who are disabled, elderly, or chronically ill. Whenever I have been admitted to a hospital, I experience a certain apprehension, knowing that medical caregivers may "opt out" of providing me life-saving medical treatment if they decide my quality of life is not sufficient to justify their effort and expense.

...

Everyone is just an accident or illness away from joining me in the bulls-eye of the growing threat of euthanasia. Even now, many senior citizens are pressured to sign "Do Not Resuscitate" orders when admitted to the hospital. They are devalued because of age. As our Medicare and Medicaid systems lurch from one fiscal crisis to the next, the pressure increases to save money by denying medical care to those who are most expensive. That includes me along with others living with either physical or mental disabilities, or those with chronic illnesses whatever their ages.

Now, i have no love at all for the Catholic church, and absolutely despise the anti-feminist, anti-bodily autonomy, anti-freedom so-called "pro-life" movement, and one of the things that angers me most of all is their attempted co-option of the disability rights movement's concerns about euthanasia, assisted suicide and eugenics (it frustrates me even more that many disability rights activists seem to be happy to go along with that toxic alliance). But... regardless of where he is coming from ideologically, as far as that article goes, Wayne Cockfield is right. This is a society where a DNR order can be placed on an 8-year-old child (publicly for everyone at her school to see, no less), simply because that child is disabled and hir life is judged to be worse than death.

And as for Judie Brown's supposedly "wingnut" claims (and yes, the "American Life League" are a vile, bigoted organisation who i would argue are, in any sense of the word worth using, anti-life... but that doesn't mean anything ever said by any of them is necessarily untrue. A stopped clock is still right twice a day)... ever heard of Ruben Navarro (who, of course, we don't actually often see mentioned by right-wing US Christians... very probably because he was poor and non-white...)?

YES, precisely this kind of thing does happen to disabled people. Once again, the true horror is the fact that the "wingnuts" of the "Religious Right" have - often successfully - co-opted true claims for their own ends, resulting in people on the progressive and anti-religious end of the political spectrum refusing to believe them... and truth once again gets painted as conspiracy.

(There are parallels i could talk about here, such as the distrust of contraceptives in much of the Majority World due to how, and by whom, they have been promoted there, and the dismissal as "conspiracy theory" of very justifiable fears of eugenic and/or imperialist motivation... but i haven't got the time to go into that here...)

It's deeply upsetting and frustrating when the reality of cases like those of Katie Jones and Ruben Navarro is utterly disbelieved by "skeptics" and the left, leaving it to be co-opted by the religious right. Part of me wants to say that the disability rights movement urgently needs to disassociate itself as thoroughly and unambiguously as possible from the right-wing "pro-life" lobby as possible, but another part of me wants to point out that it is arguably the failure of the wider "progressive" political sphere or the "reality-based community" in the sciences to take notice of disabled people's valid concerns about medical practice and power - instead often jumping to ridicule anyone with any fear of medical hegemony as "anti-rational" - which has caused the serious risk of the disability rights movement being driven into the arms of viciously anti-rational and anti-libertarian religionists (i'll once again link here to thauts's awesome piece "In Which I Am Apparently Not Pro-Choice").

In many ways we are between the horns of a dilemma here - religious totalitarianism on one side, secular medical totalitarianism on the other - with the added complication that many if not most people simply don't recognise the latter, because they don't see that alternatives to a life of total lack of autonomy or a "merciful" death even exist. ("Oppression-blindness" is almost certainly a factor here... other anti-oppression bloggers have dealt with this far better than i could, but i'm too tired to find links now. Maybe i'll come back and put some in later...)

Just as the range of options for a person who has just acquired an impairment should not be limited to a nursing home or death, the range of options for a liberation movement dealing with such issues should not be limited to unexamined "rationalism" based on unexaminedly disablist premises or "pro-life" religious authoritarianism. You can't be truly "pro-choice" without access to all the choices...

Call for papers: Anarchism and Sexuality

2009-03-20T13:02:00.002Z

Apologies for long absence from this blog. I've been stupendously busy, and have also been unhappy with the look/layout of it and wanting to make some changes that i haven't had the time or effective knowledge to do. Anyway, i've half-written quite a few posts that i haven't had time to finish, so hopefully i'll finish some of them this weekend - i don't want this blog to die off, but my intent to post more frequently in 2009 doesn't seem to have become a reality...

I only just found out about this call for papers, so apologies also for only posting it now when it went out last June and the deadline for submissions is 15th April. Anyway, thought some people might be interested...

(I've been reading a lot of zines recently, as things which it's easy to read in little snippets, for example while on the bus (i've been on a hell of a lot of buses recently...) and several have been about polyamory and open relationships. I've been particularly inspired on certain levels by the connections several of them have drawn between redefining relationship structures and the struggle against statism and capitalism (which is really, i guess, the flipside of the connections authors such as Maria Mies and Silvia Federici have drawn between the growth of capitalism and the development of patriarchy, monogamy and the nuclear family). There are things i have found very problematic as well, but that i really haven't got time to write about here. I will have to do some posts on my thoughts on those zines at some point tho...)

Anarchism & Sexuality

a special issue of Sexualities: Studies in Culture and Society

Anarchism has long played a role in the politics of sexuality. Embodied in the historic figures of Emma Goldman, Oscar Wilde, Edward Carpenter & Daniel Guérin or in social movements including ACT-UP, Mujeres Libres & Greenham Common Women's Peace Camp, the erotic and the anarchic have come together. Meanwhile, recent years have seen a revival of anarchist scholarship intertwined with the global rise of what some commentators have called "the movement of movements," characterised by horizontal forms of organisation and the practice of anarchist ethics (Gordon, 2008). These movements against neoliberalism include within them alternatives to increasingly corporate-friendly & state-centred lesbian and gay politics. This special issue aims to deepen the attention of scholarship to these and other (potential) intersections of anarchism and sexuality.

Prospective authors are invited to consider the following themes (and to offer their own):

* the sexual politics of anarchisms, libertarian socialisms and autonomous feminisms

* sexuality, gender, race, class & ecology in anarchist & anarchic movements

* queering anarchism

* autonomous queer spaces

* the sexual politics of hierarchy

* sexuality and cultural activism

Deadline for paper submissions: 15 April 2009

For author guidelines, see http://sexualities.sagepub.com

For an extended bibliography on Anarchism & Sexuality, see http://www.anarchist-studies-network.org.uk/ReadingLists/Sexuality

Submissions and queries to Jamie Heckert: Jamie.Heckert@gmail.com

__________

Gordon, Uri (2008) Anarchy Alive! Anti-Authoritarian Politics from Practice to Theory (London/Ann Arbor: Pluto)

Reclaim the Night, autism, gender and perceptions of danger

2009-02-26T00:37:00.011Z

So i went to the Reclaim the Night march in Manchester last weekend, while up there meeting up with several other disability activists (dammit, why do ALL the awesome queer/crip/trans/feminist/anarchist intersections have to be in Manchester?), and it got me thinking about perception of places/spaces as "safe" or "dangerous", and how that's influenced by gender, disability, neurology and other factors...

(Side note #1: I won't make this post primarily about the politics of Reclaim the Night, but i was very pleased by the politics of this one, after the very ugly controversies around transphobia, gender essentialism and anti-sex-worker bigotry at previous ones. This one was explicitly made open to all genders, and while women (or female-appearing people) were certainly the majority (as expected), i was certainly very far from the only male-appearing person, and trans and genderqueer people were very much in evidence as being at the centre of the organisation of the march, which is definitely a hugely positive development, as was one of the headline speakers at the post-march rally being from the English Collective of Prostitutes (among the others were 2 from Women Asylum Seekers Together, and the intersections of sexism, racism, transphobia, etc were IMO extremely well drawn - disablism being the only really notable omission... but at least i was there in my DAN T-shirt, and at least one of the main organisers of the march was a disabled woman). There were some performance poets whose rather essentialist second-wave feminism was in evidence, and there were clearly unresolved contradictions, but the overall movement was definitely in a positive direction. The friends who i was up there to see had decided not to go to the march because of how put off they were by the transphobic and anti-sex-worker goings-on of the previous Reclaim the Night North events, but were very pleased at my report from this one...)

I had been expecting (or perhaps "assuming" is better, as there wasn't really anything for the expectation to be based on) that the march route would be going through Manchester city centre - seeing that as obvious both from a point of view of public visibility and from a point of view of targeting patriarchal culture and locations of sexual violence - so, when the march left the students' union (most of the main organisers were students at the University of Manchester, which is just outside the city centre) and went through back streets and a park, i wasn't too surprised, because of course that made sense, but when it got back to the university and it was obvious that that was where it was ending, i was somewhat disappointed, not to say shocked (in fact, i went off on a bit of a rant to an activist friend i hadn't seen in ages who saw me at the end, possibly freaking him out a bit...)

A friend i chatted to afterwards pointed out that the reason for the march going through obscurer, less visible areas was "because those spaces are dangerous because they're not very populated" - which i think could do with a bit of unpacking...

To me, the concept of somewhere being "more dangerous" because "less populated" is extremely counter-intuitive - danger of assault, rape, robbery, etc comes from people, therefore, to me, it logically increases in direct proportion to the numbers of people in an area. Now, the obvious rejoinder to that is that people who commit violent crimes don't do so in public places where their actions are easily visible - as, for instance, was pointed out to me many times as a child by my parents while expressing concern about me walking home from school by obscure public footpaths instead of main roads... disregarding, or failing to understand completely, that i felt far safer in obscure and unpopulated places, and the times that i was assaulted or robbed on the way home from school were all on the routes that most pupils took (and by other pupils, either from my school or other schools).

Much later, at university, i was often met by disbelief from other students when i said i preferred to walk home alone from other people's houses late at night than to get taxis - and a common response from female students when i said i felt safer walking alone was "you're not a woman". My usual response to that was two statistics - that the demographic at highest risk of being assaulted in public places at night is actually men between the ages of 18 and 24, and that women are far more likely to be sexually assaulted by a taxi driver in a taxi than by a stranger while walking alone, and far more likely to be sexually assaulted in their own homes than either. (Several people flat out refused to believe these.)

Of course, the point that i was missing at the time was socialisation - something that, due to my own lack of it, i was pretty fucking ignorant of in almost all contexts, and still isn't "instinctive" for me to recognise the existence of. Regardless of the actual likelihood of a particular danger happening, it's the perception of it that actually matters in terms of how people deal with it - and the perception of the danger of assault, particularly sexual assault, is heavily influenced by patriarchal cultural norms. It's extremely difficult for anyone who hasn't actually experienced that socialisation (including myself) to fully understand the ways in which women are socialised from childhood to believe that going out alone is unsafe, that the outside world in general is an unsafe place for women to be without male protection - and that, conversely, "the home" is a safe place for women - despite the vast majority of sexual violence happening within the home.

One of the main points of Reclaim the Night is to counter these false perceptions - although, IMO, that isn't always made clear enough, as one friend commented that ze thought the concept of needing to "reclaim" outside spaces at night could actually reinforce the perception of being outside at night being dangerous for women - seeing it as a movement to "reclaim the night" from actual danger - whereas my take on it was pretty much the exact opposite of that. (I suspect both perspectives were present - certainly some of the chants and displayed slogans on the march could be interpreted either way...)

This got me thinking about... odd (and quite difficult to explain) intersections of neurology, socialisation and privilege. My attitude to walking home alone at night could very easily be attributed purely to male privilege - yet, while i am in no way attempting to deny that i have male privilege - despite being genderqueer, i look male, and therefore have (at least some forms of) male privilege whether i like it or not - i think it's actually somewhat more complex than that...

As a very, very socially isolated child with no real comprehension of gender norms at all, and no perception of myself as either a sexual or a gendered being, i don't think that what i got could be accurately described as "male socialisation" (and what "male" socialisation i was aware of, i resisted with great stubbornness) - in many ways, the assumptions about life that i developed in my teenage years were (somewhat, though probably not much) closer to typical female ones (and i did in fact seriously consider the possibility that i might be a trans woman when i was around 13 or 14, tho i fairly quickly realised that wasn't the case when i realised i didn't feel any dysphoria about, or overwhelming need to modify, my actual body). While not wanting to appropriate anyone else's experience, i very tentatively think that this is a parallel experience of many trans people (both men and women) who feel strongly that, even though they were "brought up as" their birth sex, they actually experienced more of the socialisation typical to the gender they identified as.

Also, as a child and teenager regarded as "naive" and "vulnerable" and constantly "worried about" in very negative ways by my parents, i was heavily overprotected and discouraged from doing anything independently (while being put in a "double bind" of simultaneously being berated for not having a social life like "normal" children), and had the threat of kidnapping and/or sexual abuse drummed into me at every possible occasion. Yet, i didn't care about that threat - for one thing, i was unconvinced that anything an adult could do to me could be worse than what was done to me on a daily basis by other children, for another, sex and sexuality were pure abstractions to me that had nothing to do with my daily life and no emotional significance for me at all... but, perhaps most importantly, i simply was not capable of caring about physical danger to myself. Physical pain, yes; but the mere threat or likelihood of something happening to me did not interest me at all until and unless it actually happened to me.

This, i am fairly certain, was not a "male thing" but an "autistic thing" - as i have met several other autistic (or otherwise developmentally disabled) people, both male and female, for whom perception of (and/or ability to care about) danger was similarly altered or absent. (This, i think, is one of the things that often gets autistic people seen as "naive", and therefore in need of paternalistic protection due to our own "ignorance", when in actual fact the autistic person may be just as aware of a threat as any neurotypical person, but just react differently to it, and thus be percieved as not acknowledging it - i remember describing myself as "wilfully naive" in an attempt to explain that.) However, it's easy to see how such an attitude on the behalf of an autistic person could very easily (and even rightfully) be percieved as indicative of privilege by others - in fact (although this deserves its own post), it's one of the reasons why i actually think some autistic people sometimes have privilege over neurotypical people of the same gender and/or socioeconomic background...

(Yes, this is extremely controversial. Yes, i will (hopefully) be coming back to it...)

(Side note #2: Part of me wonders if this is one thing that contributes to the theory held by people like Simon Baron-Cohen that autism is an "extreme male brain" - that autistic behaviour, regardless of the gender of the autistic person, and whether due purely to neurology or also to (lack of) socialisation, actually mimics male privilege...)

(Side note #3: It's interesting that "perception of the risk of physical danger" is one of the "capacities" listed in the UK's Disability Discrimination Act as justifying the definition of a condition as "disabling" if they are affected by it - therefore, lack of perception of a risk of physical danger can, depending on the circumstances, be regarded either as disability or as privilege...)

Another thing that this brings to the forefront is the potential ambiguity of what a Reclaim the Night march is actually for - or, perhaps more accurately, who it's for (not the question of whether it's "for" women or people of all genders, but another sense of "for"... oh, how i love linguistic ambiguities ;) )... is its primary purpose for the empowerment of the actual marchers (in which case, going through the kind of areas which the majority of women or of oppressed people are made by society to feel unsafe in makes the most sense), or is it to be a public demonstration (in which case, going through very public areas like the city centre would make most sense)? My perception was very much that it was (or should have been) the latter (I almost certainly wouldn't have come from another city to a march which was purely intended to empower the people going on it - particularly as i already feel perfectly safe walking through unpopulated areas at night... in fact, far safer than i do walking through crowded city centres during the day) - but maybe others there saw it primarily as the former? Or, of course (and probably most likely), there were elements of both - with the possible tensions or contradictions between them perhaps percieved, perhaps not percieved.

(and even if the experience of the march is empowering for those on it, does that empowerment last or transfer over to situations other than the march? - as i overheard one fellow marcher say... "of course I feel safe walking through a deserted park at night when i'm with a hundred or so people carrying torches!")

So... yeah. I am still somewhat undecided as to how effective, either as public protest or as empowerment, Reclaim the Night actually is. I certainly have a more positive view of it than quite a few people i know (including several who identify as feminists), but i also think many, if not all, of those people's criticisms of it are very valid. One point, coming from a friend who decided not to go, which i think was particularly valid is the point that it is not only women who are told not to go out after dark alone, or who are commonly regarded as, if not actually to blame, then at least foolish or "irresponsible" if they are assaulted, raped, robbed or murdered while out after dark alone - a wide variety of oppressed and marginalised groups of people, including (but almost certainly not limited to) trans people of all genders, disabled people of all genders, and members of any minority (ethnic, linguistic, sexual, whatever) in areas where prejudice-motivated violence against that particular minority is common or well-documented, are subjected to the same patterns (with subtle variations) of victim-blaming and cultivation of a culture of fear (I actually think this is particularly heavy for disabled people who are either dependent on assistance from others to go out "alone", or who are regarded as requiring such assistance even if they are not, and who are subject to extremely paternalistic paradigms of assistance and "supervision"... and here, again, i link the Stay Up Late campaign) - and therefore, i think that, to avoid falling into the gender-essentialist trap of regarding gender-based oppression (regardless of whether or not it is historically prior to other forms of oppression... on which question i'm agnostic) as primary to all other oppressions in such a way that it's treated as the only oppression worth engaging with (and thus alienating everyone who is on the receiving end of any other type of oppression), Reclaim the Night as a movement needs to recognise that it is not only misogyny that the night needs reclaiming from.

I'm sure that there were other directions i was going to take this post when i started it. (It wasn't even meant to be a particularly long post...) Anyway, i guess i'll have to get back to them...

Disability and/in Music: recent roundup

2009-02-11T21:10:00.004Z

I've come across or been given links to quite a few things about disability and music recently. This is more of a roundup of what i've recently encountered than a proper analytical post on the issue, but i do intend to do the latter at some point soon.

Firstly via FRIDA i found this post at Racialicious, about international disability music from Zimbabwe and from the Arab world, and a bit of analysis of what constitutes "disability music" as well. (I'm not quite sure if i like that phrase "disability music" - to me it sort of feels like it implies that disability is all the music is about, or that it exists in total isolation from the rest of the music world. The interplay between "disability arts" and the "mainstream" art world is always a tricky one in all art forms, which i sort of meant to, but didn't really, touch on in this post... i probably will at some point tho, just not now, so i'd appreciate any thoughts on it, especially from people who are in any way directly involved in the "disability arts movement"...)

(The website of the Zimbabwean band Liyana, linked to in the Racialicious post, doesn't seem to load for me - i don't know if it does for anyone else...)

The Arabic music video, Difference is Normal (which has English subtitles), is part of the Sprout Film Festival, which is a US-based festival of short films by and/or about people with "developmental disabilities" (which i believe translates roughly to UK terminology as "learning disabilities", tho i'm not sure if the categories are identical; i don't actually know whether autism is included within the umbrella of "developmental disabilities", or what if any difference there is in US terminology between "developmental disability" and "developmental disorder", for example), which looks like it includes some really awesome stuff, tho i haven't had the time to watch very much of it. They have a YouTube channel here.

Also with regard to international music, i recently discovered Poor Magazine, one of the contributors to which is "Krip Hop" artist Leroy Moore (whose stuff i haven't yet managed to hear any of), who has interviewed and/or written about many international disabled musicians, including the late disabled Kenyan reggae artist Mighty King Kong and The South African Disabled Musicians Association.

(As an aside, i'm incredibly excited by Poor Magazine, and really wish there was a UK equivalent to it - it covers just about all issues relating to poor, oppressed and marginalised peoples in the US, including racial and sexual minorities as well as disabled people and... just check it out, it's awesome...)

Leroy Moore also has an interview with the UK disabled punk band Heavy Load. The BBC has just shown a brilliant hour-long documentary about Heavy Load as part of their Storyville series, which is available to watch on BBC iPlayer until Monday 6th April 2009 (at least if you're in the UK - i don't know if people outside the UK can watch it or not). I could go on for ages about the documentary, but i'll just say now that it's absolutely essential viewing for anyone interested in disability and/in music, and unflinchingly shows all sides of the story, including some of the contradictions within a band made up of disabled and non-disabled musicians which has its roots in an essentially paternalistic "disability services" environment (a housing association), yet which aims to transcend and overturn that (although, TBH, i'm not entirely sure how many non-disabled people watching would "get it" about those aspects... to me they're pretty clear and very well shown, anyway...)

There's one scene in particular, near the beginning of the documentary, when Heavy Load play their first gig for a "mainstream" audience, in a "normal" suburban pub, without having announced that they were a band mostly made up of disabled people, which made me think "this must have been what punk was like when it first appeared" - the "normal"-looking, culturally mainstream, non-disabled audience starting out with serious "what the fuck???" expressions on their faces as Heavy Load break out with a chaotic thrash-punk version of the Batman theme tune, and end up cheering with massive (and, seemingly to me anyway, genuine rather than patronising) enthusiasm - truly revolutionary culture shock.

(It's also amusing to see the ubiquitous Mat Fraser popping up announcing the band at a gig - i don't think there's anything to do with disability and the arts happening in the UK that he's not involved in...)

Heavy Load are also the founders of the Stay Up Late campaign (inspired by the title of one of their songs), which, IMO, is an absolutely fucking brilliant idea - after being pissed off by the number of disabled people who had to leave their gigs early due to inflexible support provision (meaning they had to go home when their support workers' shifts ended), they started a campaign to end this paternalistic discrimination and give people who need support to go out the right to have such support at any time they want.

There's another interview with Heavy Load here from the BBC's Ouch! podcast (hosted by... guess who), and Heavy Load also have their own website, and a Myspace page where you can hear some of their tracks, including "Stay Up Late".

(It's worth noting that searching for "Heavy Load" on YouTube also brings up several other results, including a rather awful 80s epic-fantasy-themed metal band with the same name and two reggae songs... yes, there is practically everything on YouTube...)

The film about Heavy Load is subtitled "a movie about happiness", and in the intro narration, filmmaker Jerry Rothwell states: "The first thing I noticed about Heavy Load was that they seemed to have found the secret of happiness; everything they did together brought them joy." While the truth of this statement seems to be borne out by the film (and also challenged/subverted by it, as the film doesn't shy away from the tensions and unhappiness within the band), it does remind me of the very dodgy stereotype of learning-disabled people as somehow inherently happier than those with "normal" cognition, or as having some sort of existential secret for non-disabled people to learn from them (this shades into the "angel on a mission to make society nicer" stereotype, and tends not to be so much associated with people on the autistic spectrum, but to be particularly associated with people with Down's syndrome (which Heavy Load's drummer, Michael White, has); i've sort of touched on the constracting characterisations of people with Down's and autistic people before, but i do intend to address it in greater detail in a forthcoming post).

This reminded me of the song "Mongoloid" by 80s art-punks Devo, a song i've always had profoundly ambiguous feelings about. (I've recently been listening to a bit of Devo through finding most of the classic post-punk documentary "Urgh! A Music War" - which features several other bands i love, such as The Au Pairs and Steel Pulse on YouTube.) The song is named after a former term for people with Down's syndrome (actually the term first used by John Langdon Down, the "discoverer" of the syndrome whose eponym is now used instead), which is now considered offensively both disablist and racist, and starts with the lyrics:

Mongoloid, he was a mongoloid
Happier than you and me
Mongoloid, he was a mongoloid
And it determined what he could see

I'm really not sure whether to regard this song as offensive or as something that should be "reclaimed" as a disability anthem; on the one hand, it describes the "mongoloid" living a "normal", successful life in mainstream society and "no one even cared" about his "one chromosome too many", sending an arguably positive message; on the other, it also smacks strongly of disabled people being "Othered" by non-disabled artists for their own purposes, and of course uses the disablist, racist word as its title and chorus.

There are plenty of other songs by non-disabled musicians using disablist language that i have no problem at all with reclaiming and regarding as (albeit unintentional) disability anthems (examples like Prince Buster's classic ska tune "Madness" and the equally classic jungle tune "Original Nuttah" come to mind), but there is a layer of unease with "Mongoloid" for me that there isn't for them. Perhaps it's the racist as well as disablist dimensions to the word, perhaps it's that there's a stronger feeling of "Othering" from a non-disabled viewpoint in it; i'm not entirely sure.

(It is interesting to compare Devo's concept of "de-evolution" - the theme that humankind was supposedly degenerating intellectually in a "reverse" process of evolution - to Langdon Down's concept of the "ethnic classification of idiots", based on the Victorian racist idea that mentally disabled people were "regressions" to earlier evolutionary stages of humanity, namely the non-white races - whether the song was directly inspired by that idea, i don't know, but it's possible. "Mongoloid" was originally the B-side to "Jocko Homo", aka "Are We Not Men?", which was inspired by H.G. Wells's "The Island of Dr Moreau", a book which explored similar themes of evolution and colonial racism, and which i think also has a lot of, mostly-unintentional, disability resonance. I'll get around to posting about that some time...)

Anyway, thoughts both particularly on that song and on reclaiming pop-culture uses of disablist language in general would be much appreciated. (I would love to hear exactly what Michael White thinks of it, if he's heard it...)

And there i went into an analytical post anyway, even if not the one i intended to...

(The lack of recent posting has been largely due to what winter does to me, physically and mentally, combined with being pretty busy at the moment meaning i've had to divert spoons from blogging to other things. I'm still pretty busy, and going to be for the next month or so, but hopefully will have, if not more free time, a bit more energy if/when the weather improves. A more detailed description of the effects winter has on my mental processes may be my next post...)

Another offensive advert from Action for Children

2009-01-30T00:26:00.003Z

Via a thread on the BBC Ouch message board and a comment on my last post, i have been alerted to the existence of a second advert by Action for Children which offensively stereotypes disabled people: Nicola's Story...

Again, it lacks subtitles, and i haven't seen a transcript already existing, so i'll transcribe it:

I started caring for my mum when I was 8 years old. She was diagnosed with having MS, so I had to look after her: help her to bed, help her to get up, get dressed, get fed[?]... I had to change the catheter bag, to clean her if she didn't make it to the toilet, and things like that. I had struggles - I didn't know how to talk to my peers, cause I didn't have time for fun and games. It was Action for Children that helped me, and... from then, I became a totally different person. I've been able to recapture some of my youth, and be a normal child.

(apologies for any mistakes - my auditory processing issues don't always interact well with certain accents, such as this Scottish one...)

The visuals in this case show a child's drawing stuck to a fridge become animated: a young girl is skipping underneath a red "love heart", which grows and falls into her arms as her expression becomes sad, synchronising with the words "I had to look after her". The girl staggers under the weight of the heart as the background becomes darker, lifting it into a bed and cleaning it. The heart gets bigger and darker, looking like it's crushing the child, until the red line which represents the charity (the same one that shredded Dan's "monster") lifts it away from her, causing it to shrink so that she can put it on her chest. The background becomes sunny again and "Nicola" regains the smile on her face and starts skipping again, with the heart having become the logo on her T-shirt.

Now, what's wrong with this picture? The heart seems to be intended to represent "Nicola"'s love and caring for her mother (note the conflation of "care" as used to mean personal assistance, with "caring" about someone as in a loving family relationship) - but with "Nicola" lifting it in and out of a bed and washing it, it also seems to represent the mother herself - reducing her from a human being to an inanimate object and, quite literally, a burden on her daughter - in about the most blatant characterisation of disabled people as "burdens" that i've seen outside of directly eugenic propaganda calling openly for extermination (see the origin of the term "Ballastexistenz").

No mention is made of the social factors causing children to have to take on "carer"/personal assistance roles for disabled adult family members: instead, it's "She was diagnosed with having MS, so I had to look after her" - blaming the disabled individual and her impairment, rather than a society which doesn't provide anywhere near sufficient funding for personal assistance for disabled people, and puts massive administrative barriers in the way of obtaining it (I personally know several people who have been put in life-threatening situations as a result of this, and one whose death might have been prevented if she and her partner had received adequate personal assistance services - for a current example, see the case of Minna Mettinen-Kekalainen, who is in Canada, but the same is going on in the UK), for the situation of a child being a carer, and portraying dependency as an inevitable consequence of disability.

Also, there are disturbing implications in what isn't explicitly shown here: in what way did Action for Children "help" Nicola? Was it, as with Dan, by moving her to some sort of residential institution? If so... what happened to her mother? Who provided her with the personal assistance that was previously being carried out by Nicola? Were both mother and daughter institutionalised in "care homes" (#1 contender for Most Orwellian Euphemism Ever), when it would have almost certainly cost less to enable the mother to employ a personal assistant to assist her with both her personal care and childcare needs, thus giving her choice and control and enabling her daughter to enjoy her childhood (I nearly wrote "have a normal childhood" - let's not even get into the loadedness of that term here), without causing either the disabled person herself or her non-disabled family members to perceive her as a "burden"?

Gah. I could write more, but i won't. It looks like Action for Children are eager to take a place up there with Leonard Cheshire and Scope in the disablist charity league tables...

Also: re the "Dan" advert, Action for Children have, on their blog, tried to deny that it demonises autism or autistic children:

"The monster in the advertisement is absolutely not Dan's autism. It is the way that he himself described how he felt his behaviour was before getting this support. Dan wanted to talk specifically about his autism and we believe it would have been wrong for us to censor him or his ideas in any way."

This, frankly, is fucking ridiculous - they are essentially blatantly denying the only interpretation of their advert that makes any kind of sense, followed immediately by shifting the blame from the makers of the advert to the child featured in it (and invoking "censorship"... :theatrically rolls eyes:)... so, if the monster is "absolutely not Dan's autism", then why does it being shown chasing people around coincide with "Dan" saying "My parents sought out help with my autism because it was becoming a pain in the bum"?

This is a completely cowardly and disingenuous statement, and excuses nothing.

One more thing: on the BBC Ouch thread, someone posted a link to how to complain about an advert to the UK Advertising Standards Agency: How to complain.

Their website also contains the TV Advertising Code (which contains quite a lot of stuff that i think is fucking ludicrous, and apart from the entire principle of censorship, if interpreted literally could actually make nearly all adverts bannable, but that's beside the point here). Of particular relevance to the Action for Children ads are these sections (and possibly others, but these are the ones that sprung out instantly to me on a quick read-through of the Code):

Section 4: Political and Controversial Issues

No advertisement:

(a) may be inserted by or on behalf of any body whose objects are wholly or mainly of a political nature

(b) may be directed towards any political end

(c) may have any relation to any industrial dispute (with limited exceptions)

Oh, the irony. I could write at length about how all charities are inherently political here... or i could just link to a Skunk Anansie song. It's late, so i'll do the latter.

Section 6: Harm and Offence

6.4 Personal distress

Advertisements must not, without good reason, contain material which is likely to cause serious distress to significant numbers of viewers

...

6.6 Harmful or negative stereotypes

Advertisements must not prejudice respect for human dignity or humiliate, stigmatise or undermine the standing of identifiable groups of people ...

(3) Anything which could encourage or condone the idea that some serious negative characteristic is associated with a particular group must be avoided.

(4) Particular sensitivity is required where the group in question is generally recognised to encounter prejudice. The kind of humour which may be acceptable in other contexts can seem patronising or demeaning in these cases.

(5) Care is needed with stereotypes of children to avoid the risk of taunting or bullying. Children who are ‘different’ physically or in their behaviour, ability or background must not be presented as unpopular or unsuccessful. Nor should they normally be presented as non-users of a product or service or unworthy of it. Even if an advertisement portrays only adults being stereotyped, an ill-judged stereotype could still be harmful to children (for example, by encouraging bullying).

(6) Experience has shown that well-meaning attempts by commercial advertisers to counter prejudice about, for example, race or disability can sometimes backfire. Appropriate guidance should be sought...

Section 11: Other categories

11.3 CHARITIES

11.3.3 Children

No fund-raising message may be addressed to children or be likely to be of particular interest to them...

11.3.4 Ethical responsibility

Charity advertising must reflect a broad sense of ethical responsibility

Note:

These advertisements should:...

(b) not exaggerate the scale or nature of any social problem

(c) respect the dignity of those on whose behalf an appeal is being made...

For those who are on Facebook, there are Facebook groups protesting both the "Dan" and the "Nicola" adverts, respectively here and here (let me know if those links don't work, i find Facebook can be weird with linking, and am not sure what's only visible to logged in members...)

Monsters and changelings and charity advertising, oh my

2009-01-24T19:41:00.006Z

Through the Politics of Autism email list, i was notified today of this new TV advert by the charity Action for Children (formerly the National Children's Home) - an advert which consists essentially of all the worst stereotypes about autistic people all rolled into one in the most blatant form...

For those who can't view the video, it's just under a minute long, and starts with a cartoon monster running through a sped-up, dystopian-looking urban landscape (blurred crowds of people, concrete walls, graffiti, litter, etc). The monster changes shape, but the figure of a small, forlorn-looking child can be clearly seen looking out from inside its mouth. A red line (which seems to represent the charity) takes the monster/child out of the urban landscape and into a green field, looking like typical English countryside with trees in the background - then literally tears the monster into pieces, leaving the child inside "free". The monster re-forms in the grass next to the boy, and starts to rise up - presumably to "eat" him again - but the boy tramples it into the ground. He then walks towards the camera, smiling, while the red line re-appears, twining around him before forming into the words "as long as it takes".

The voiceover, apparently in the voice of the real "Dan" (possibly not his real name*) - it sounds like an adolescent boy's voice, and there is (what sounds to me like, anyway) an "autistic inflection" to his voice - says:

"I used to lash out if something pushed my buttons or I wasn’t able to do something. Things that wound me up were if they’d insulted me I would physically hurt that young person. My parents sought out help with my autism because it was becoming a pain in the bum. I went to an Action for Children school. I started feeling a bit more friendlier with other people. Thanks to the carers I was able to correct a lot of errors in my behaviour and become a better person. Well I feel a lot more confident thanks to them. I feel at peace with myself."

In addition to this, at Action for Children's website there is an image gallery called "Meet Dan", giving another narrative (again transcribed for those unable to view the images):

Hi, I'm Dan.

I thought that autism was like everything else I had. I felt it hard to listen. I was loud, obnoxious and generally bad-tempered.

As the outset of becoming a man came in, it started to get worse and I was just afraid of what was out there, afraid one day I'd leave my parents and I wouldn't be able to survive or anything like that. Survive independently.

And let's put it this way, I wasn't a great brother or son.

My parents found out about this place and I first started off a bit wobbly and well, to say the least, I felt hurt. I felt betrayed by being left there.

I thought no-one really cared. I sat alone in my room and just... I was really upset.

But then after a few months, about a year of being there, got a bit more steadier, started being a bit more friendlier with people.

People have said that Dan you're a lot more respectful, you can be a lot more honest and people have given me their trust, trust to do the right thing and trust to look after something.

My carers and my teacher, I think they're great company, great people. I feel homesick when I'm away from the school. Like part of me has been left there.

I feel a lot more confident now. I'm learning to cook and take care of myself. I feel a lot more at peace with myself.

This narrative is, to me (whether it's genuinely "Dan's" words or not) frankly disturbing. It reads like a narrative of Stockholm syndrome, and like the sort of "self-denunciations" common in totalitarian societies such as Catholic Europe in the time of the witch-burnings, Stalin's Russia or Mao's China. It seems to follow a twisted authoritarian logic in which perfectly understandable feelings about something done to one against one's will are described only so that they can be recanted, as the influence of the "higher authority" has led the person to "see the light" (and/or the "error of their ways"). Feelings of betrayal are trivialised as being "a bit wobbly". Dan's apparent "peace with himself" is reminiscent of Winston Smith at the end of Nineteen Eighty-Four, finally loving Big Brother.

"Dan's" life story is very much like mine, if you were to simplify mine to a similar extent - except that i was not diagnosed in childhood, and - perhaps as a consequence, perhaps not - luckily escaped such "intervention". I had the same fear of never becoming independent from my parents, and i certainly wasn't a "good" brother or son, at least according to how those roles are imposed within the "standard" Western patriarchal nuclear family. "Dan" was betrayed - he was passed like an unwanted buck, sold down the river. I too was betrayed by my parents as an adolescent - which I won't write about in detail here, but probably will eventually, when in more of an autobiographical mood - and left "home" at 16 with practically nothing in terms of either material possessions or life experience - but i did survive independently, because i had to. I could not have done if i had been divided, brainwashed and broken in the way that it looks like "Dan" was.

(And this is not to say that every autistic person, or indeed any non-autistic person, should be forced to "sink or swim" to "live independently", or that people shouldn't get support to learn the skills to live (more) independently, or that all such support is "brainwashing" - there is a profound difference between self-directed support - as Amanda Baggs describes here and here and the kind of "support" that is imposed on a person by others and seems to mainly consist of antagonistically trying to change that person into an entirely different kind of person - also, everyone in a developed society, even someone who lives on hir own and has a self-supporting income, is "dependent on others" - as Baggs points out here...)

*I can't help thinking that the name "Dan" was picked because of one or both of two significant acronyms - the curebie "charity" Destroy Autism Now!, which practices the exact same demonisation of autism and autistic people as portrayed in this advert, or the Disabled People's Direct Action Network - in the former case, "Dan" is the poster child for "anti-autism" intervention, in the second it's the "awful spectre" (a la Communist Manifesto) of disabled people fighting for acceptance and social change - and against charity - that is the "monster" to be defeated.

The imagery of this advertising campaign comes straight from the "changeling" or "demon possession" school of genocidal (by implication, if not necessarily intent) rhetoric - separating "the autism" from the autistic person, and portraying "it" as a separate entity, a "monster" that has "eaten" the child and needs to be destroyed in order to set the child free. This is straight out of horror fiction, and as far from reality as the beliefs in literal demon possession that still persist in some extreme Christian sects (and occasionally make the news when someone dies as a result of an "exorcism"). Portraying "autism" as a separate entity from the autistic person is, just by itself, breathtakingly offensive - saying, effectively, "This is the part of you which is acceptable, and this is the part of you which is unacceptable, and, whether you like it or not, we re going to kill the latter part of you". "Autism" is not some entity separate from autistic people, "it" is autistic people - or rather, it's a name given to a set of characteristics of people that are as inherent to those people as "non-autism" (or "allism") is to non-autistic people. To portray "autism" as a monster is to portray autistic people both as monsters and as passive, helpless "victims" of monsters, simultaneously (though the curebie charities seem to be unable to see that contradiction).

This sort of thing is covered very well at Autism Demonised (which seems to have been abandoned as an ongoing blog, but is still online as an archive), and by Amanda Baggs (again) in posts such as "What not changing us means", so i won't go to too great lengths about it... but, when it has been pointed out so many times, why is it still happening?

The image of the child trapped inside the "autism monster", passively looking out until the charity frees him and "empowers" him to kill the monster (is this promotion of suicide?) also draws on another common and deeply insulting stereotype, that of the child "trapped inside a shell", the idea that there is a non-autistic child somehow "inside" the autistic child and wanting to get out. This particular image tends to get used particularly by advocates of biomedical interventions to "cure" autism (including those who believe autism to be caused by vaccines... which i'm not even going to get into the complete falsehood of here), and again treats "autism" as something somehow separate from the person - as well as assuming that every autistic person really wants to become non-autistic - which is as arrogant and bigoted as assuming that every queer person really wants to become straight, or every black person really wants to become white. As Jim Sinclair wrote in "Don't Mourn For Us":

Autism isn't something a person has, or a "shell" that a person is trapped inside. There's no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person--and if it were possible, the person you'd have left would not be the same person you started with.

This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.

Therefore, when parents say,

"I wish my child did not have autism,"

what they're really saying is,

"I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead."

Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.

Imagery like this, regardless of the (supposed or genuine) benevolence in its intent, says that we do not have the right to exist as the people we are.

One interesting thing is that Action for Children is not an "autism charity", or even a disability charity, per se - their website's "about" page says that they are "committed to helping the most vulnerable children and young people in the UK break through injustice, deprivation and inequality, so they can achieve their full potential", and that they are "the leading UK provider of family and community centres, children's services in rural areas, services for disabled children and their families, and services for young people leaving care." Their residential schools for autistic children are only one of several projects they have for children variously classified as "vulnerable". Yet, despite autism not being their central concern, they have picked up this narrative of autism from somewhere, and applied it unquestioningly, seemingly seeing it as entirely unproblematic.

This implies that the underlying values of autism charities which portray autism in this way are not unique to those organisations, but that there is something deeper-rooted in the concept of "charity" itself. I don't have space or time to do a full critique of charity here, but i think it's very telling that even a charity which doesn't have disabled people as its main focus so easily uses imagery that implies fundamentally changing people - without caring if that change is against their will - is not only acceptable but a positive social good - i think that says a lot about the fundamentally authoritarian and "Othering" nature of charity...

I'm gratified that the autism blogosphere has responded to this so quickly - there are already other posts about it at Action for Autism, The Voyage, The New Republic, and probably others - as well as a brilliant cartoon response at Asperger Square 8.

I'm not very good at writing "reasonable"-sounding letters of complaint to charities and the like, but if anyone else wants to i've been informed that the correct email address to send letters of complaint to is supporter.care@actionforchildren.org.uk. The autistic and disability rights movements successfully defeated the "Ransom Notes" ad campaign, which used similarly oppressive and hateful imagery, last year; we can defeat this as well!

Call for papers: Disorderly Conduct

2009-01-19T22:28:00.003Z

Another awesome-sounding call for papers via FRIDA:

Call for papers: Disorderly Conduct (July 24-26, 2009)

CALL FOR PAPERS
Interdisciplinary Conference
July 24-26, 2009
Wilfrid Laurier University and University of Waterloo
Waterloo, Ontario, Canada

Keynote speaker: Dr. Steven Angelides, Department of Women’s Studies, Monash University

Other featured speakers will be confirmed for the release of the official conference announcement to follow.

DEADLINE FOR SUBMISSIONS: February 27, 2009

The conference, “Disorderly Conduct” will bring together scholars from around the world and from such disciplines as sociology, philosophy, health studies, history, women’s studies, and medicine to explore and problematize the notion of a “disorder”. The conference seeks to bring front-line medical and mental health personnel who treat various “disorders” together with humanities, social science and health and disability studies scholars who work (in one way or another) on theoretical questions related both to specific “disorders” and to the notion of a disorder simpliciter. In workshops and symposia, conference participants will engage questions like the following: What, if any, are the downsides of being diagnosed with a disorder? Does the concept of a disorder provide treatment advantages or disadvantages? Are there other advantanges or disadvantages that it incurs, besides those related to the treatment itself, for those diagnosed with a disorder? Can we reasonably expect to avoid problems of stigmatization and marginalization by turning to a medicalized language of disorder to apprehend and explain embodied difference?

Conference organizers kindly invite submissions from scholars and health (physical and mental) professionals in all disciplines. Abstracts (500 words), papers (2500 words, 20 minute papers for delivery in 30 minute time slots), symposium proposals, workshop proposals, and roundtable discussion proposals will be considered. Proposals for symposia should include the names and affiliations of all participants and their papers or abstracts. Authors submitting abstracts should be prepared to submit final versions of their papers to the conference organizers by June 30.

All submissions will be anonymously reviewed; names should appear only on a cover page, and cover pages should be attached in a separate file. Authors’ names or other identifying information should be removed from the properties of files before submission. Authors should indicate on their title pages if they wish to have their submissions considered for inclusion in the published proceedings of the conference . All submissions should be emailed to both Morgan Holmes at mholmes at wlu dot ca and at Shannon Dea at sjdea at uwaterloo dot ca by midnight February 27, 2009. Authors should expect to know the decision of the program committee by around March 1, 2009.

Authors might consider submitting a proposal concerning one of the following (but should not feel confined by what is merely intended as a suggestive list):

*What relationship (if any) holds between the concepts, diagnosis and treatment of gender identity disorder and disorders of sexual development?

* What lessons should the editors of the inchoate DSM V take from the DSM IV?

* Is old age treated as a disorder? Should it be?

* What role does “big pharma” play in the identification of various disorders?

* Does our current notion of a disorder adequately reflect our understanding of the social determinants of health?

*How can we use the concept of “disorderly conduct” to subvert the use of labelling practices and normative medicine?

Conference organizers are currently seeking federal funding to support this conference. Contingent upon their success, they may be able to financially assist speakers with their travel and accommodations costs.

For more information on “Disorderly Conduct,” see the conference website at http://arts.uwaterloo.ca/~sjdea/.

No barriers! No borders! No "last frontiers"!

2009-01-14T21:51:00.005Z

(This wasn't the post i originally intended to do today - that one was about PA work and its relationship to labour activism and Marxist analyses of wage work, which was actually meant to be done on Sunday, but got... long, and i got distracted by other stuff going on in my life (including getting voted on as a director of my local Centre for Inclusive Living). That post will probably have to wait until some time next week to get finished, as my first board meeting is tomorrow night and i'm away all weekend. Yes, my plan to post as near as i could to every day in January hasn't worked out so well...)

This is (a slightly edited and expanded version of) the email that i just sent to the UK "Politics of Autism" mailing list, in response to this article on the Guardian website, written by a member of that list - "Autism: equality's last frontier":

I don't like this "equality's last frontier" stuff.

There are many, many other people or groups of people still being discriminated against just as much as autistic people are: not only disabled people with impairments other than autism, but also queer/trans/gender variant people, ethnic minorities, asylum seekers, single parents, sex workers, workers in other "looked-down-on" jobs, indeed poor people in general - and almost certainly many other groups that i've forgotten to list, but the point is not to list or attempt to rank who is the "most oppressed", it's that liberation struggles of oppressed people need to have solidarity with one another, not play some sort of zero-sum game or "Oppression Olympics" in which they feel the need to compete with each other or claim that only their own oppression is real and that everyone else's is either not really oppression or has already been overcome, when it really hasn't (calling autism "equality's last frontier", for example, assumes that racism, sexism, homophobia, transphobia, etc have already been "conquered"... to say nothing of the dodginess of the "frontier" metaphor itself, if actually examined... er, imperialism anyone?).

This is a criticism far more of the title than of Nadine's article itself, and i appreciate that article titles are very often not chosen by the actual writers of the articles, so i'm not necessarily assigning Nadine responsibility for it, as it's more likely that it was some Guardian hack with neither knowledge nor interest in autism or any disability issue who chose it. However, i've seen this type of rhetoric used a few times recently (The Advocate magazine cover saying "Gay is the new Black: The Last Great Civil Rights Struggle", for example) and it annoys me enough to feel the need to speak up about it. (Note that if autism is "equality's last frontier", then gay people can't be fighting "the last great civil rights struggle" - to claim one's own group's oppression as "the last" by definition puts it in conflict with other oppressed groups.)

I agree with most of the article itself, but where i think it scores an own goal for the same reason is the bit that says:

"Discrimination on the basis of someone's height, age, race, sexual orientation, accent, social status and disability is against the law: we all innately know that it is morally wrong. If you took a white stick away from a blind person or a wheelchair from someone who could not walk, society would be outraged and rightly so. But autism is an invisible disability and people on the autistic spectrum are subjected to inhumane treatment and are bullied and rejected every day in Britain. It is unacceptable."

Leaving aside that i don't think we (who is "we"?) necessarily *do* "innately know" that discrimination is morally wrong (because i think that's a whole other discussion about what is and isn't "innate", which i'm not verbally coherent enough for right now), people with other disabilities/impairments to autism also get "subjected to inhumane treatment" and "bullied and rejected" all the time in Britain - it may not take exactly the same forms as with autistic people, but IMO it's easy enough to join the dots. (The case of the disabled man who was recently left to die by paramedics in Brighton is one topical example... and one of many, many horrific disability-related news stories in the last month or so that i simply haven't had the time or energy to blog about...)

Yes, there is prejudice against "invisibly" disabled people even within the disability rights movement (i previously mentioned this here), but equally i have encountered a huge, and often totally unexamined, amount of prejudice among some autistic people ("Aspies for Freedom" springs to mind) against non-autistic disabled people, and even against other autistic people who are more visibly "disabled" than themselves (Amanda Baggs has written about this many times, so many in fact that it would take me far too long to link to even the best few examples here - just search her blog for, say, "functioning level" or "aspification").

What i'm essentially saying is that we need solidarity rather than competition between different oppressed groups, and to recognise the autistic rights movement as part of a wider disability rights movement, which in turn is part of an even wider movement for acceptance of all human diversity and an end to all oppression (which was one of the main points of my presentation at last year's Autscape - at which quite a few people on the Politics of Autism email list were present).

(to add, which i didn't put in the original email) I'm still not entirely sure that i properly understand the concept of intersectionality, or if what i talk about when i use the term is exactly the same as what other people talk about when they use the term in anti-oppression discourses (hence my not having a tag for it, altho i do have the tag "linking disparate things together) - but one of the key insights from those discourses for me is that there is a huge difference between simply drawing parallels between different dimensions of oppression (which the point of, when it's done right, is to show that no one oppression can be understood in isolation, but all are interlinked and rooted in related social and thought systems) and drawing comparisons in such a way that the result is competition (the aforementioned "Oppression Olympics"), antagonism or people of one oppressed group claiming that another group's oppression is not as real as their own - which, ultimately, only benefits the oppressors, through the simple principle of "divide and conquer".

(some discussion on these topics here... another relevant post here)

For example, prejudice against physically impaired people among neurodiverse-but-able-bodied people and prejudice against neurodiverse people among physically-impaired-but-neurotypical people (both of which i've encountered, including among activist/advocacy groups) both ultimately only benefit the disablist system by pitting different groups of disabled people against each other... while people with both physical and mental/neurological impairments get completely screwed over by both "sides" of the disability community, in addition to already being the group of disabled people most likely to suffer the worst aspects of disablist oppression (institutionalisation, abuse from "carers", denial of access to communication, homelessness, extreme poverty, extreme social isolation, and death from easily preventable diseases) - likewise, things like the whole recent mess over California Proposition 8, in which black people were blamed for homophobia and subjected to racist abuse by queer white people, or similar past polarisations over (for example) homophobic lyrics and interview statements by reggae and hip-hop artists, only result in queer people of colour being excluded, alienated and hated from both sides, while suffering by far the highest rates of poverty, homelessness, HIV infection, and physical attacks up to and including rape and murder. The antagonism between transsexual and genderqueer people discussed here is yet another example.

There is some genuinely great stuff going on in various places around intersections of different oppressions - one of the best examples i know of that people i know are involved in, from which i took the title for this post, is No Barriers, No Borders, a group of disabled asylum seekers and refugees, based in Sheffield

(unfortunately i couldn't find the actual report - credit to my awesome friend Clair for the picture)

- but it is still deeply frustrating to see different, or often not-all-that-different, groups of oppressed people fighting it out over who is the most oppressed or claiming that everyone else has nothing left to complain about and theirs is the only remaining "true" oppression. We need to break down all the barriers and "frontiers" between us, because only then can we rise up together...